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10 Minutes with: Isabella Evans of "Isabella Signs"

Meet Isabella Evans from South Wales, who you may recognize from the “Isabella Signs” videos we’ve shared many times on the MTeam’s Facebook page. She creates daily signing videos, usually with her siblings involved, using the Makaton language.

It’s easy to forget that she’s just 13-years-old when you hear about all she has already accomplished, on top of being an amazing big sister to two brothers who both have special needs and a little sister too.

We caught up with her to find out more about why she started signing, why it’s important to her, what it’s like to be a special needs sibling and how that might influence her future career choices.

Isabella answered all of our questions in video format and they are also transcribed below, so take your pick!

MTEAM: Tell us a bit about yourself and your family.
ISABELLA EVANS:
Hi, my name is Isabella Evans. I’m 13-years-old, and I live in Bridgend (near Cardiff) in South Wales. I have three siblings, two brothers and a sister. Alexander is 9-years-old and he has cerebral palsy; Lucas is six and he has down syndrome and Indiana is five.

Izzy and her siblings

Izzy and her siblings

MTEAM: What keeps you busy beyond the daily signing videos you create.
IE:
I do a fair bit of modelling. I’ve done multiple campaigns and I’ve been published online at Vogue Italia. I work at a swim school two nights a week helping the little ones swim and I just enjoy going out with my friends. 

Isabella for Vogue Italia

Isabella for Vogue Italia

MTEAM: You’ve built an amazing community on social media where you share signing videos, usually with your siblings involved. Can you tell us a bit about when and why you started doing this and why it’s important to you? 
IE:
I started doing sign language because obviously I’ve mentioned Lucas has down syndrome so he is non-verbal. I’ve always wanted to communicate with him so I thought sign language was definitely the best way possible.

I remember my mum’s friend and her little son who has down syndrome came round and I was signing to my favorite song (which is Rockabye), so my mum took out the camera because she thought it was really cute. She uploaded it to Facebook and it got like 30,000 views in a couple of days. So that’s when I realized that other people want to learn and that they need help communicating with their loved ones who are non-verbal, who have additional needs. So that’s why I started this, to help other people. 

Isabella next to boxes with herself on in Smyths

Isabella next to boxes with herself on in Smyths

MTEAM: Tell us about the specific type of signing you use in your videos and explain a bit about what it is and how it works for those of us who are unfamiliar. 
IE:
In my videos, I use Makaton. If I can’t find a word in Makaton, then I would resort to using BSL (British Sign Language). With Lucas, Makaton is a lot easier for him to pick up, so that’s why we use that with Lucas.

 
Isabella and Coco (Lucus)

Isabella and Coco (Lucus)

 

MTEAM: What resources would you recommend to someone, beyond your amazing videos, that would help them learn to sign? 
IE:
Oh my gosh, there’s so many! If you look at my facebook page, I have a pinned post with them all on there. Some of the main ones are definitely the Makaton Charity because they’re the ones who made this incredible language. Two lovely ladies called Suzanne and Tracy from Singing Hands. They’re amazing and they’ve helped me so much. There’s a lot of other ones, especially some unofficial pages like Sign Along with Us and Genna and Jaxon who are amazing. There’s just so many that I couldn’t name them all.

Isabella  and her siblings with singing hands.jpg

MTEAM: Tell us more about your siblings! What do each of them love most? What makes them happy? What makes them uniquely Lucas, Alexander and Indiana?
IE:
I’ll start with Alexander. Alexander enjoys Xbox and playing Fortnite. He also loves to dance. Obviously he tried as hard as he can because he has cerebral palsy, but he puts as much effort in as he can. But his favorite move is probably the Floss. He does it all the time. We can be in Tesco (supermarket) and he’ll be there flossing in the queue.

Lucas enjoys Avengers, Lego Ninjago and he also likes to dance as well. Even when he had his gallbladder removed and he was in pain, he was still dancing.

Indiana is a proper girly girl. She like anything pink, glittery, shiny, anything with the word unicorn in it, rainbows, coloring, anything girls; she loves it. 

Isabella in hospital with Lucus when he was in recovery after having his gallbladder removed recently; she adores him

Isabella in hospital with Lucus when he was in recovery after having his gallbladder removed recently; she adores him

MTEAM: How has being a big sister, specifically to two brothers with individual special needs, influenced your life so far? Maybe it's too early to tell, but do you think being a big sis to Lucas and Alexander will influence your future career choices at all?
IE:
Yea, definitely. I’ve always wanted to help people and with experience helping Lucas and Alexander, that’s definitely made me realise 100% that I either want to be e a teacher or just something to do with children with disabilities. It’s just amazing. I love, like with Lucas and Alexander, just spending tie with them. I get along with them so well, so with other children, it would be really nice to work with them.

Isabella, Lucus and Indiana - on a fine art shoot (they aren’t meant to smile)

Isabella, Lucus and Indiana - on a fine art shoot (they aren’t meant to smile)

MTEAM: What are some of the ways you most enjoy bonding with your siblings?
IE:
Cinema time. When we go to the cinema we enjoy it so much. And that’s one of my favorite times  with the kids. But also, my signing! When we’re all sat here at the table, it’s just amazing when we’re all signing together. And you guys get to see it every day!

Sibling bonding time

Sibling bonding time

MTEAM: What would you say to someone who is struggling with their role as a sibling to someone with special needs?
IE:
Just obviously understand that they’re probably struggling as well because maybe they can’t communicate with you or something. They are struggling as well. Just take it day by day, breathe and just be patient; be really patient with them.

Isabella Signs featured in a model magazine

Isabella Signs featured in a model magazine

MTEAM: How could the world become a more inclusive place for Lucas and Alexander to grow up in?
IE:
I think just having more awareness of people with disabilities. That would definitely help them massively.

Trying on the clothes they would be wearing the following day for an appearance on This Morning with Phil Schofield and Rochelle (TV show)

Trying on the clothes they would be wearing the following day for an appearance on This Morning with Phil Schofield and Rochelle (TV show)

MTEAM: If there was one thing you’d most like the world to know about Lucas and about Alexander that you haven’t said here already, what would it be?
IE:
They entertain me and my whole family so much, all the time. Literally I’ll be watching TV, just minding my own business, and Lucas and Alexander will come in front of me and they’ll either do something hilarious or they’ll just be sat there laughing at something. Alexander’s laugh makes everyone laugh because it’s just so funny. I just love them both so much and they’re just hilarious. 

People need to remember that Lucas and Alexander are more alike than different. And what I mean by that is that they’re more like me and you, and yea, they’ve got a few additional things going on, but that doesn’t make them any different to us. They’re exactly the same as us. And that’s how they need to be treated. They need to be treated the same as us and not differently. That’s something that I definitely need to get across.

 
10 Minutes with Isabella Signs.png
 
Candyce CarragherComment
MTeam Spring Fundraising Gala: Casino Night

“We just had another amazing MTeam Auction and Casino Night fundraiser! So fortunate to be surrounded by so much love and support. Life changing. This picture says it all.” - Mer’s dad, Greg Lewis

Mer, up on stage with the auctioneer pumping up the the crowd to make it rain!

Mer, up on stage with the auctioneer pumping up the the crowd to make it rain!

We’re thrilled to announce that our annual spring gala last weekend raised another $25,150 for our 2019 campaign for Best Buddies International and disability inclusion. 

MTeam Gala 2019.png
MTeam Gala.png

We want to extend a huge thank you to everyone who made this event possible:

  • CAPA The Global Education Network who let us transform their Boston offices into an amazing casino;

  • everyone who donated an item or experience to our auction and raffle;

  • our auctioneer extraordinaire - Mer’s grandpa Jim Lewis;

  • Colette from Collettey’s Cookies who came to speak;

  • the team that organised the event;

  • Aaron Wong for taking photos and videos during the evening;

  • Meredith Lewis for pumping up the crowd during the auction;

  • Catherine Colon for dealing cards for our casino games;

  • and of course to everyone who attended and donated to our fundraising efforts!

Jim Lewis - Auctioneer extraordinaire

Jim Lewis - Auctioneer extraordinaire

“This was my third MTeam Gala as auctioneer, and I was very excited with the results. I thought the -Raise the Paddle’ initiative did extremely well too, ending up with a sizeable total after only about seven minutes!  Well done, MTeam!!” - Jim Lewis

The “Raise the Paddle” initiative allowed people to supporting the MTeam at five different levels of giving. We started at $1000, $500, $250, $100, and $50. People raised their paddles and paid their pledge at checkout! We raised about $7500 in a matter of minutes. Very generous!

MTeam Gala 2019
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Auction and raffle items included trips to Cape Cod, England, Barcelona, Sydney and Hong Kong, a chance to play football with Tom Brady, passes to the Tom Brady Best Buddies football event, a signed Tom Brady football, a signed Tom Brady jersey, passes to the Best Buddies Challenge after party at the Kennedy Compound, passes to the Guy Fieri Celebrity Chef Food and Wine Festival Dinner, a homemade lap-size quilt by master quilter Mary Beth Dittoro, a Wahoo indoor cycling trainer - Kickr, 3 Celtics tickets, a gothic tube bird feeder by Pat Sadler of Sadler Garden Collections, a mini bar and glasses, 1/2 case of Bordeaux wine, a Fitbit Alta, a sculpture, a visa card for $150 valid at any restaurant, a $150 voucher for goods and services at Apex Velo, and two paintings by Beverly Sky.

MTeam captain John Christian with speaker Collette and her mother Rosemary

MTeam captain John Christian with speaker Collette and her mother Rosemary

Now that the evening has come to an end, we’ll be pouring our focus into our final stretch of fundraising as we aim to reach our $250,000 goal this year. We’ll also be training for the Best Buddies Challenge which is just three months away.

MTeam Gala.png
Gala.png

We’re always looking for new runners and cyclists to join the MTeam. We’re family-friendly. Everyone is welcome. We’re also always open to donations to our campaign from those who aren’t ready to commit to becoming a member.

Everything we do is for disability inclusion and our fundraising supports Best Buddies International whose four pillars of work include one-to-one friendships, integrated employment, leadership development and inclusive living.

MTeam Auction: Online bidding is open!

Dear MTeamers and Friends:

We are all very excited to host our “Fedoras & Sequins: A Night at the Casino” event casino this Saturday (March 2, in Boston)! We have amazing speakers, food, bar and, of course, the casino games, an auction and a raffle.

For the first time ever this year, we are thrilled to announce that were opening up the auction to those aren’t attending on the night and we will accept email bids in advance for the first time too.

Have a look through the slideshow below with our auction items (best expanded to full screen!) and if you’re interested in bidding on an item, send your maximum bid to us by email with your phone number so we can manage the payment should you be successful:

EMAIL BIDS TO DAMITA AT djohnson@capa.org. (Please be specific as to which item and your maximum bid in USD.)
NOTE: The deadline for bids is Saturday 2 March at 1pm EST.  

PLEASE EXPAND SLIDESHOW TO FULL SCREEN OR VIEW HERE!

We’ll also have 10 generously donated raffle items available on the night including 3 Celtics box seat tickets, a gothic tube bird feeder from Sadler Garden Collections, a mini bar and glasses, 1/2 case of Bordeaux wine, a Fitbit Alta, a decorative sculpture, a $150 visa card valid at any restaurant and a $150 voucher for goods and services at Apex Velo.

All of the proceeds from the tickets, auction and raffle will go into our campaign for Best Buddies International and our goal to raise $250,000 to support their work for disability inclusion this year!

If you would like to attend there are still a few tickets.
TICKETS AVAILABLE HERE!

Thanks to all who have made this possible and all who participate, for donations and for your support!

Wish us luck!

John and the Mteam

Candyce CarragherComment
10 Minutes with: Nicole Johnson

Meet Nicole Zeitzer Johnson who is making real strides toward helping scientists find a cure for FOXG1 syndrome (the rare genetic condition that both her daughter Josie and the MTeam’s Chief Motivating Officer Meredith were both born with) through her work as a co-founder, President and Chief Communications Officer of the FOXG1 Research Foundation. Below, she talks about her work with the Foundation, shares some insight into her life with Josie and gives her best advice for parents receiving a similar diagnosis for their own child.

 
Interview Nicole Johnson - FOXG1
 

MTEAM: Tell us a bit about yourself and your family. 
NICOLE JOHNSON:
I’m Nicole Zeitzer Johnson. I live in Long Island, New York, outside Manhattan, with my husband, Rich and our son Tanner (12) and daughter Josie (7). We’re a big music family; my husband is in the music business, as was I until this past year when I co-founded the FOXG1 Research Foundation.

Interview with Nicole Zeitzer Johnson - FOXG1.jpeg

MTEAM: You’re a Co-founder and President of the FOXG1 Research Foundation. Who are the other co-founders and what led you to start the FOXG1 Research Foundation?
NJ:
The following story is an excerpt from the FOXG1 Research Foundation website:

Nasha Fitter in California, Nicole Johnson in New York, and Christine Revkin in Switzerland, each experienced the same life-changing, heartbreaking event that inevitably brought them together.

Their children, Amara, Josie, and Nathanaël, were not meeting simple milestones. What was happening? They endured MRIs, EEGs, and test after test after test, months and years spent trying to find a diagnosis. Finally, they each learned their child was born with a rare, severe genetic condition called Foxg1 syndrome.

They were all told their children would be intellectually disabled, they would probably never walk, talk, sit up unassisted, eat without a feeding tube, and were likely to suffer from seizures and undergo many operations.

These three moms refused to accept the prognosis without doing something about it. The questions came pouring in: what is being done about this? Are there scientists researching this gene? Are there trials in the works? What is known?

The answer was - not much. There was very little known about Foxg1 syndrome and in the age of exponential advances in genetic research, they all knew that someone had to take action.  

(READ THE FULL STORY OF HOW THE FOUNDATION WAS FORMED HERE)

Interview with Nicole Zeitzer Johnson - FOXG1.jpeg

MTEAM: For those who have never heard of FOXG1, can you help us understand a bit about what it is and how it manifests itself? How has this condition touched your own life and perhaps even changed the course of it?
NJ:
Foxg1 syndrome is a very rare neurological genetic condition caused by a mutation of the Foxg1 gene. It’s mostly non-inherited, meaning my husband and I are not carriers; it’s a spontaneous mutation of the gene. It’s congenital, meaning Josie was born with FOXG1 syndrome. There is a spectrum of mutation types and some kids are less severe than others, but for Josie (and many) it is severe. 

Josie is seven years old and she cannot walk, talk, crawl, or even sit up without falling. She is fed with a feeding tube and she suffers from epilepsy. 

When we got Josie’s diagnosis, which took two years of endless tests to get, Josie was the 60th known person in the world with FOXG1 syndrome. Today there are 500 known; the diagnosis rate is growing at 100% year. But when I learned of this condition I felt helpless. There was so little known about it. There was very little research done. I thought, who is going to care about a condition with so few patients? But I’ve learned something incredible. I’ve learned that there are many scientists who are eager to study Foxg1 because it happens to be a very interesting and important gene. Foxg1 was originally called Brain Factor 1 because it is one of the first and most critical genes in brain development. It’s a transcription factor that creates a protein that turns on other genes. It is responsible for telling the brain what to do. Scientists are finding links from Foxg1 to many brain disorders that affect millions of people, such as autism, Alzheimer’s, schizophrenia, and brain cancers. 

This made me realize that if we can do the work to find a cure for FOXG1 syndrome, we have the potential to help solve much more. Imagine that’s why we’re here? 

When my co-founders and I got together to drive research forward to find a cure for every child in the world with Foxg1 syndrome, I felt this unexplainable inspiration that our work is meaningful beyond measure. I use the term “beyond measure” quite often. 

Every scientist funded, every collaboration of researchers, every minute spent in the lab can change the blueprint of human life. That's another sentence I'm hot on - change/improve the blueprint of human life.

I sit at my desk with my long-ass to-do list. Newsletter- sent! Cross it off the list. I carry my 50 pound seven-year-old totally disabled daughter around, I wipe the drool from her mouth, clean her mic-key button on her belly so it doesn't get infected, I administer a bevy of anti-seizure medications through her g-tube, and I plug away with an incredible team of FOXG1 parents to drive the research forward to change the face of this awful rare genetic disorder - not just for Josie, but for every child in the world, today and in the future, with FOXG1 syndrome.

Interview with Nicole Zeitzer Johnson - FOXG1.jpeg

MTEAM: The FOXG1 Research Foundation had some remarkable achievements in 2018. Share a few highlights and tell us what you’re focusing on for 2019.
NJ:
If you look at the bullet points in the last newsletter we sent, it highlights our greatest accomplishments of 2018. One I want to point out is our Scientists Symposium we held in San Diego in November. This was a pinch-myself 3-day event where we brought together scientists from every corner of the globe who are studying Foxg1 or are interested in studying Foxg1 for a deep-dive symposium to collaborate. We held it alongside the Society for Neuroscience Conference so that it made sense for all the neuroscientists to be there.  One scientist said to me “I’ve never seen a foundation accomplish nearly what you have in one year; what you have done takes most many years to accomplish.” 

We learned so much for our research strategy by bringing all these brilliant minds together to discuss what we know so far about Foxg1 and what we need to know. (READ MORE ABOUT THE SYMPOSIUM HERE.)

For 2019, we just launched the Foxg1 Patient Registry! This is a big deal because it is so critical to have for a Pharmaceutical company to even consider investing in us (or any disorder) for clinical trials. (READ MORE ABOUT THE REGISTRY HERE.)

Our big goal for 2019 is to fund a host of research proposals that our Scientific Advisory Board has vetted and recommended we fund along our path to a cure. We need to raise an estimated $2M in 2019 to be on track along our Path to a Cure. (READ MORE ABOUT THE PROPOSALS HERE.)

Interview with Nicole Zeitzer Johnson - FOXG1jpeg

MTEAM: What is a typical day at the FOXG1 Research Foundation like for you?
NJ:
Well, I wake up and start wrapping my brain around everything we have to do, all the money we have to raise, the help we have to find, and more. Then, thanks to our CFO (also a FOXG1 mom), Angie, who has really helped me get organized, I look at our detailed to-do list. 

Every day is different as far as the jobs I am working on. I mostly cover all communication aspects of the Foundation so I might be working on a strategy document, or a presentation, or a newsletter.  I have an ambitions communications strategy that I’m trying to really get on a roll to achieve. Our newest board member and Secretary, Judith, has joined me on the communications front, which is also a great help.

But there’s so much more. I work with my partner, Nasha, on aspects of our research strategy. I’m always networking and meeting with or on calls with people whom I can learn from or perhaps that I can help. I have been invited to speak at different events in the neuroscience and biotechnology space, so that is an aspect of my role as the public-facing co-founder, President and Chief Communications Officer of our foundation.

Interview with Nicole Zeitzer Johnson - FOXG1.jpeg

MTEAM: Tell us a bit more about Josie and her personality! (How old is she? What does she love most? What makes her happy? What makes her uniquely Josie??)
NJ:
Josie is the greatest gift and just ridiculously cute. Can you imagine not being able to speak, or sit up, or take care of your basic needs, I mean not even able to push yourself up in your bed, yet you smile and laugh all the time? 

I always say: if happiness is the goal in life (and isn’t it?), then Josie is winning! 

Take a look at this video at the end of this response. She laughs from her belly and everyone around her can’t help but laugh along. I could hug Josie all day; well, on the weekends that’s basically all I do. She’s delicious.

Sometimes when it’s really early and it’s just us in her room, me holding her in the rocking chair, I start crying. It’s when I let it out. And when I cry she looks at me with the same face every time like she knows how much I wish for her, and she knows I would do anything to give her the abilities she deserves, but every time, without fail, while I sit there holding her with tears on my cheeks, she starts laughing at me. Every time! 

Not to sound too spiritual, but deep down Josie and me both know she is going to change the world.  She gives everyone an incredible sense of perspective. I want everyone to recognize that she is smiling and happy despite her head-to-toe disabilities. 

MTEAM: What have been some of your biggest challenges and the best rewards along your journey with FOXG1 so far?
NJ:
When the seizures started and they were severe, grand mal, and it took more than a year to get them under control, well, that was one of the most difficult times of my life. I was living outside my body. I couldn’t sleep. In fact, for six months my husband and I took turns staying up all night watching Josie. Now we have night nurse care, thank gosh! Multiple ambulance rides, multiple stays in the hospital, and just overall fear and helplessness. Yeah, that was the worst. She is doing much better now on her anti-seizure medicinal cocktail of three heavy-duty medications, topped off with CBD oil, which is the medicine that made the biggest difference. 

My biggest challenge now is how heavy she’s getting. I really need to get us into a handicap accessible home.

Interview with Nicole Zeitzer Johnson - FOXG1.png

MTEAM: What advice would you offer to other parents who are just finding out about a similar diagnosis? How can they advocate for their own children? What resources do they have available to them either through the FOXG1 Research Foundation or elsewhere?
NJ:
The first thing I want to tell them is to feel everything they feel and do not feel ashamed of it. It’s a process for many. I hope to share my optimistic outlook that while this isn’t easy, there is something very special about it. I try to stay in the mindset that our lives are just different. My family really doesn’t have a woe-is-me attitude. We are not owed anything and we were not cheated out of anything. We are grateful every day for Josie and that she is doing much better today than she was a few years ago when I was way too used to sleeping next to her in the hospital. 

  • I beg for every single Foxg1 parent to go to our website and fill out the Patient Registry! This is so important. It can be found under parents and caregivers on foxg1research.org 

  • There is also a place under that tab inviting parents to join our Stem Cell Biobank and have their child’s blood sample turned into an IPSC line for research.

  • Please follow us on social media under FOXGResearch 

  • There is also a wonderful closed Facebook group called FOXG1 syndrome Parents Support Group.

I did an interview answering the question: “How can a parent can advocate for their child?“ No matter what the diagnosis is, even if it’s a broken arm, I offered some advice for parents to think of themselves as medical manager. Here’s that interview:

MTEAM: What are some of the key changes that would make the world a more inclusive place for children born with FOXG1?
NJ:
Top of mind, I wish Huggies or Pampers would size up! They make the best diapers, but they do not consider disabled older children. 

I’m noticing some great new clothing being made for children with disabilities. Like Billy footwear! And the Target Cat and Jack line for disabilities. 

I’d love to see more of this.

I really want to wrap my brain around an idea to help parents. Our community was rocked with devastating news that one our Foxg1 moms that we all feel so connected with through our parents group lost her battle with depression. She left this world on her own, leaving three kids and a medically fragile Foxg1 boy behind. I don’t think she wanted to. I know she loved her family so much. It is almost impossible to understand the weight that depression and mental health has on anyone, and add the stress of caring for a medically fragile, disabled, nonverbal, immobile child. It’s a perfect storm. 

I know that the work we are doing is not only for the kids, but for the parents to have life easier. I just want every parent to be able to walk down the street holding their child’s hands and talking about anything. That is why we’re here.

MTEAM: If there was one thing you’d most like the world to know or understand about Josie or about FOXG1 generally, what would it be?
NJ:
Josie smiles so much because she is a pure loving soul who only sees the good in the world. 

We are here to make a tremendous difference for so many. We need help. We need a lot of help to reach our goals. I am not good at asking for help, and now I can’t stress enough how much help we need to raise the money to fund the scientists to find a cure for Foxg1 syndrome and potentially so many other brain disorders affecting millions of people.

Candyce CarragherComment
10 Minutes With: Shaina Honderich

Meet Shaina, mom to Kennett. Like Meredith (whose name is the “M” in MTeam, Kennett was born with FOXG1. Below, Shaina tells us a bit about Kennett’s life, his sweet personality, and a few of the times she’s been especially proud of him. She also shares her own advice to other parents just finding out about a FOXG1 diagnosis and a few tips for those of you who may feel a bit nervous about meeting someone with special needs for the first time.

 
10 Minutes with Shaina Honderich - Kennett - FOXG1.png
 

MTEAM: Tell us a bit about yourself and your family.
SHAINA HONDERICH:
My husband (Greg), Kennett & I (Shaina) live just outside of Ann Arbor, Michigan. Kennett will be 3-years-old in May. Greg works as a routing engineer for Waste Management and I am a homemaker; I also have a side direct sales business with Maskcara Beauty. But most of my days are spent caring for Kennett and taking him to his different therapies and appointments. We love hanging out as a family. Reading. Watching movies. Going to the zoo. Kennett loves being outside, especially in warm weather; once spring comes, we’re outside a lot. 

Shaina - Kennett - FOXG1.jpg

MTEAM: Your son Kennett was born with FOXG1. Can you explain what that means to anyone who is hearing of this for the first time? How has it manifested itself in Kennett’s case specifically?
SH:
I had a very normal, “typical” pregnancy. Kennett was born at 42 weeks, 1 day. We struggled with breastfeeding, but he was still gaining weight, so I just kept working at it. I really didn’t start noticing anything different with Kennett until his 4 month well-child check. There were some developmental questions that were asked that he wasn’t meeting. Plus, his eyes were still crossing a lot. I knew it was normal for eyes to cross in newborns, but his never went away. Around this time his weight also became a concern. His pediatrician suggested supplementing with formula. We tried so many! And nothing seemed to be working. From this point on, I felt like I was going to the pediatrician once a week because something just didn’t seem right. He still wasn’t meeting milestones and not gaining weight.

Finally when he was 7 months old, he went over a day just refusing to eat anything I tried. I took him to the ER and we ended up being admitted in hopes of figuring out what was going on with him. He had an MRI and they found that he has dysgensis of the corpus callosum (the bridge in his brain didn’t fully develop). This also lead to the beginning of genetic testing, where we finally got the diagnosis of FOXG1 Syndrome.

The FOXG1 Gene in utero is responsible for turning on many of the brain development functions. Because Kennett’s is mutated, it caused the dysgensis of the corpus callosum. Kennett has a global developmental delay, so for example, he’s almost 3, but doesn’t walk, he army crawls. He also doesn’t have any words, he babbles a lot and seems to understand A LOT, but has no current way of communicating back to us.

Shaina - Kennett - FOXG1 - 1.jpg

MTEAM:  Tell us more about Kennett! (How old is he? What does he love most? What makes him happy? What makes him uniquely Kennett??)
SH:
Kennett will be turning 3 in May of this year. He is just the happiest little guy around! He is seriously such a joy. He loves to laugh and he loves to hear and make others laugh, too. He loves to be praised, so we really like to encourage that and praise him any chance we get. He absolutely loves dogs. He thinks they are the best thing ever (too bad mama is allergic, otherwise I know his daddy would’ve gotten him one already!). His favorite TV show is Puppy Dog Pals on Disney Junior. He has a few toys of the characters from this show, and as soon as he sees the puppies from this show... man does he light up! He also has this very specific scream(?), for lack of a better term, that he uses while playing with his puppies. It is so fun to watch.

 
Shaina - Kennett - FOXG1 - 2.jpg
 

MTEAM: What’s a typical day in Kennett’s life like?
SH:
Day to day, it varies quite a bit. Our days are usually scheduled around appointments. Every week we have Speech, Occupational and Physical Therapy. Then we have Early Intervention services through our local school district twice a week. Plus any other specialty appointments (GI Doctor, Neurologist, etc.). We work really hard daily to get Kennett to eat. We’ve finally gotten to the point where he doesn’t fight much to drink a bottle anymore, so now we’re working on getting him to eat solids regularly. He also doesn’t sleep much at night; it’s very much like still getting up with a newborn to 3 month-old baby every night. He does very rarely sleep eight hours straight, and those nights are glorious!

 
Shaina - Kennett - FOXG1 - 3.jpg
 

MTEAM: What sort of advice would you give to parents who are finding out about a FOXG1 diagnosis for the first time?
SH:
Take time to grieve the expected life you thought you’d have. I hope that makes sense. I know for me, when I was pregnant I planned this whole life for the little one growing inside of me. Dreamed of him walking. Talking. Playing sports. So many of the “normal” things. Having a child with FOXG1 brings a whole new normal to daily life though. Just know it’s ok, and almost necessary, to grieve those expectations.

I think it’s also important to not compare your child to any other (as hard as that is!). Even comparing to other children with FOXG1 Syndrome can be so burdensome. The variations of how the mutation effects each individual has so many differences that it can become such a huge weight to put on your shoulders. Don’t get me wrong, I still catch myself in that comparison game, but then I just remind myself that Kennett is an individual with a very unique mutation specific to him. So while he may not be able to do some things other children can with FOXG1, there may also be things he can do that others can’t.

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MTEAM: What would you say to anyone who has an opportunity to meet someone with FOXG1 (or others with different abilities) for the first time but feels a lack of confidence about how to interact with that person?
SH:
Don’t be nervous! Disability is not inability. Just because someone looks different, or cannot communicate in a typical way, doesn’t mean it isn’t possible. It may just look different than you expected. Honestly, starting out by interacting how you would to any other other person is the best way to start. Then you can go from there. 

 
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MTEAM: What have been some of the biggest challenges you’ve faced along your journey with Kennett so far and what do you love most about being his mom?
SH:
The busyness of having a child with special needs has been very hard for me. I’m a very introverted person and I thrive on having days that I can stay home and do nothing. That’s how I recharge personally. Unfortunately, we don’t get many of those days. They’re usually filled up with appointments and therapy. Which, in retrospect I know I am totally ok with. We’ve seen such huge benefits and gains from all of the appointments, so I know it’s the right choice for Kennett.

What do I love most about being Kennett’s mom? Everything! He is seriously just the sweetest little boy. He loves me fiercely and loves to cuddle; how can I not love and soak up every minute of that?! 

 
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MTEAM: What key changes do you think would make this a more inclusive world for Kennett?
SH:
Honestly, I haven’t had an experience (yet) where I’ve felt like Kennett was excluded from something because he’s different. I’m not sure if that is because he is still little or not. I’m sure at some point I will feel like he’s being excluded because of his differences. But thankfully, I haven’t experienced that yet. Our family is very supportive and help us a ton. Our church family is the same. In fact, at church, they’ve really been the ones to push me to have him be in his appropriate aged classroom (I’ll admit I kept him back in the nursery rooms with younger babies for probably too long). But this past weekend, he was in with the other 2-year-olds his age and I was told by the workers in there that he absolutely loved it. I’m also very thankful to go to a church that has an amazing Special Needs Ministry, so if we get to the point where we need it, I know that it’s available.

 
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MTEAM: Share a memory of one of the times you’ve been especially proud of Kennett.
SH:
I can think of so many times I’ve been proud of Kennett. Recently, he had to have a 48hr EEG. He was so well behaved, I couldn’t believe it. He also works so hard at therapy, he’s very compliant, like he knows that what he does with his therapists is helping him, so he just does it. Another thing that comes to mind is our recent trip to Disney World. I really wasn’t sure how things were going to go, but he absolutely loved every moment of it! He was so good, and just really went with the flow. And if you’ve ever been to Disney, you know how it’s a constant go, go, go when you’re there. He especially loved the characters; this picture with Mickey Mouse is my absolute favorite. Kennett just cracked up the whole time we were with Mickey.

 
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MTEAM: What’s one thing you’d like the world to know about Kennett or for Kennett to know about the world?
SH:
I don’t think I can say it enough. Kennett is really just the happiest, sweetest boy ever. He has his challenges developmentally, but man does he give the best smiles and cuddles, and he works so hard to overcome those challenges. I honestly believe (and see) that he can do anything he puts his mind to. And I hope the world sees him that way!

As for what I hope Kennett knows about and sees in the world... the good. There’s so much good in the world. So many caring people and people who want to make the world a better place, and I hope that someday he is one of those people that makes a huge difference in the world.

 
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Candyce CarragherComment
10 Podcasts to Listen to While Training for the Best Buddies Challenge

Feed your mind while training your body for the Best Buddies Challenge with one of these fantastic podcasts on a range of topics like fitness, health, wellness, diversity, special needs and inclusion:

 
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1. WORK, PLAY, LOVE. Run by parents to two young children, Jesse Thomas (an Iron Man competitor and triathlete) and Lauren Fleshman (marathon runner, coach and author), “Work, Play, Love” has some clout when it comes to knowing how to balance life and a fitness routine. Episodes cover everything from running shoes to recovering from a bike crash to the exercise vs sleep debate. Tune in weekly at https://pickybars.com/blogs/the-scoop/work-play-love-podcast

2. RARE IN COMMON. A few years ago, the “Rare in Common” documentary shared the stories of several members of the rare disease community. Today, this Emmy-nominated film has stretched into the realm of the podcast to continue to tell talk to those whose lives have been touched by rare diseases - either directly or through their role as as parents, siblings, caregivers or others. Tune in at https://www.rareincommon.com

3. THE RICH ROLL PODCAST. With over 50 million downloads, this is a popular one. Rich does a weekly deep dive into a variety of wellness topics covering everything from nutrition to fitness to entertainment to spirituality. His approach is more of an intimate conversation than an interview, designed to educate, inspire, provoke and empower. Tune in at https://www.richroll.com/category/podcast/.

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4. MAMA BEAR PODCAST. There’s a powerful community of parents out there who are raising kids with special needs. Mama Bear, run by Mary Susan McConnell, focuses specifically on the mothers in this group, inviting guests on her show to share their own stories and have conversations around topics like demystifying the g-tube, balancing special needs and a career as a parent and caregiver burnout. Tune in at https://soundcloud.com/user-258150714.  

5. EMPOWERING ABILITY PODCAST. Disability inclusion is a big focus of the “Empowering Ability” podcast, hosted by Eric Goll, a coach who works with families who have a loved one with a disability. Guests are invited to share their stories, memories, advice and opinion on everything from being a caregiver to mental health of those with developmental disabilities to relationship building and understanding the sibling experience. Tune in at https://www.empoweringability.org/blog.

6. ALI ON THE RUN. Runner Ali Feller invites marathoners, everyday runners, professional athletes, entrepreneurs and other industry leaders onto her podcast to talk about their decisions, successes, failures and missteps in an effort to figure out how they can guide her own path - and in turn, ours. Past guests include Google’s Brand and Creative Lead Julie Brazitis, 17-time Paralympic medalist Tatyana McFadden and Nike Run Coach Jes Woods. Tune in at http://www.aliontherunblog.com/ali-on-the-run-show-podcast/.

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7. ASK A CYCLING COACH. Dedicated to making you a faster cyclist, this one is for the Best Buddies Challenge century riders, those of you who take the fitness side of this experience maybe slightly more seriously. Coach Chad, Coach Jonathan and Nate Pearson meet weekly to answer cycling questions on anything from intermittent fasting to mid-race mechanicals to strength training. Tune in at https://www.trainerroad.com/podcast.

8. HURDLE. Emily Abbate was looking for deeper connections in her life when she created Hurdle at the beginning of 2018 and it took off, featuring people who went through a tough time - a hurdle - by integrating wellness into their routines. She shares the stories and lessons of some of the top CEOs and other inspirational people to inspire us to use wellness techniques to get over our own obstacles to become happier, healthier and more motivated. Tune in at http://www.eabbate.com/hurdle-podcast/

9. THINK INCLUSIVE. This is a long form podcast that features interviews with thought leaders in inclusive education and community advocacy, by host Tim Villegas. His episodes cover everything from autistic self advocacy to the future of special education to a look at the way people with specific disabilities are or are not experiencing inclusion in their lives. Tune in at https://www.podomatic.com/podcasts/thinkinclusive.

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10. BULLETPROOF RADIO. Dave Asprey, an author, “biohacker” and researcher covers a variety of health-related topics either by experimenting on himself or calling in the experts. Recent posts from more than 500 include how to fall in love with your work, why you desperately need carbs, reflecting on the value of community and pushing the boundaries of conventional medicine. Tune in at https://blog.bulletproof.com/category/podcasts/

If you’re not yet training for the Best Buddies Challenge with us, head over to mteamcares.org to find out what we’re all about and why you should be a part of it!

Candyce CarragherComment
A Best Buddies Story: Kellie Howard

Meet Kellie Howard, who has been involved with Best Buddies International for more than a decade! Below, she talks about why this organization is so important to her, the benefits it has brought to her own life, some of her favorite memories and the story of a lifelong friendship she formed through the program.

 
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MTEAM: Tell us a bit about yourself!
KELLIE HOWARD:
I’m 30-years-old and heavily involved in my Best Buddies USF Chapter. On my time off,  I volunteer at a nursing home in the activities department. I’ve been there just as long as I’ve been with Best Buddies - for 12 years. I’m a people person. I’m the middle child. I love caring for others and advocating. I’m from Brandon, FL (aka Tampa, FL). My favorite color is purple. I love talking; it may be my favorite hobby. I love love food and music and my family.

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MTEAM: Why it the group’s mission of inclusion close to your heart?
KH:
I’ve been a part of Best Buddies for 12 long years. I enjoy it because when I was younger, believe it or not, I was shy and couldn’t really see where I’d belong. Best Buddies is a place where you can be yourself and not worry what people think about your abilities. I was pushed down, had my hair pulled, and had water poured on me for being different while going to school. Making friends wasn’t easy.  But once I found Best Buddies, all that weight seemed to let up.

 
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MTEAM: When and how did you become an ambassador for Best Buddies?
KH:
I believe after I took all those training classes. At my first Best Buddies Leadership Conference (BBLC) back in 2014, I spoke at the closing ceremony. That was when more opportunities opened up. It was the “BEST” thing that has ever happened to my confidence level, for sure. 

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MTEAM: What are some of the coolest things you get to do as an ambassador for Best Buddies?
KH:
Travel, for sure, and meet so many wonderful and amazing people. Most importantly, making long lasting friendships and networking, sharing our mission, of course.

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MTEAM: What do you love most about the Best Buddies and why is their work important? How have they helped to support you personally?
KH:
Oh my goodness, it has helped me so much. I’ve always been a talkative person, but never had the confidence or the leadership skills or the friendships I have now. Their work is so important because, in the media and schools, there is still much to be done with the disabilities community. Best Buddies is a great stepping stone to awareness. 

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MTEAM: How do you see Best Buddies playing a role in your future? Do you have a career path you’d love to follow in mind?
KH:
Working with others with intellectual and developmental disabilities. Hopefully someday working for Best Buddies International. Growing up, since I was considered higher functioning, I was always a caregiver to my classmates; even now within my chapter, I’m a role model to a lot of my peers.  

 
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MTEAM: How would you explain Best Buddies to someone who has never heard of the organization before?
KH:
First, I would explain how long the program has been around for - 30 years! - and that we’re in 50 states and 54 countries worldwide and that I’ve been a part of the non-profit for 12 years. It’s the best thing that has ever happened to me. We are dedicated to establishing leadership skills and jobs and, most importantly, friendships. We help the disabilities community not to be isolated by our society. It’s a lot of fun and free to join and you make a difference in someone else’s life as well as your own. It’s a truly rewarding experience for all parties.

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MTEAM: Have you met anyone through Best Buddies who really inspires you? Who and how so?
KH:
I would honestly have to say my buddy Emma Donahue. We where matched in 2014. I get a new buddy every year, but she became a part of my life, much more than a buddy. She became family and a friend for life. She’s even going to be my plus one in my sister’s wedding. She has seen my highs and lows and been nothing but kind to me. She sees me for my abilities and doesn’t hold me back as a buddy. She treats me just like one of her college friends and she has even taken me to clubs and has had sleepovers with me and has come to my family functions. I think my family likes her alright too! Haha, just kidding - they love her! They even buy her Christmas gifts.

 
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MTEAM: Do you have a favorite memory from your time with Best Buddies? 
KH:
Speaking at the BBLC 2014. It was only five of us speaking. I was one of the two from Florida to be picked. I had never spoken in front of so many people in my life before and the crazy thing is, I wasn’t even nervous. Another time, I was on the Young Leaders Council and even became a committed chairwomen on the International Board of Directors with Anthony K Shriver. Now, I sit on the Tampa board and Friendship Walk board. 

Being able to travel is another favorite thing, since my mom doesn’t like to get out much. When Best Buddies invites me to speak somewhere, I get so excited. I tend to pack my bag early and I get to do my favorite things: talking and networking and speaking about our mission and making memories. 

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MTEAM: What would you say to someone who was considering about supporting Best Buddies or joining a Best Buddies Challenge community like the MTeam, but not sure whether to go ahead?
KH:
I would say it’s truly a rewarding experience and it’s a really great opportunity to build friendships and confidence. It’s a lot of fun!


Candyce CarragherComment
You're Invited - "Fedoras & Sequins: A Night at the Casino"

MTeamers & Friends:

Have plans on Saturday, March 2?

You do now!

Whether you’re part of the team or just follow us on social media, you’re all invited to come along for one of our favorite nights of the year - our annual Spring fundraising gala in Boston, MA.

TICKETS AVAILABLE HERE: http://bit.ly/MTeamGala

We dress to the nines for a "Fedoras & Sequins: A Night at the Casino" themed party and, for the $100 donation entry, you'll receive two drink tokens, some delicious hors d'oeuvres and $500 worth of casino chips to try your luck at the tables.

MTeam Spring Gala

We also hold an auction and we’re looking for additional donations (have an empty holiday home, for example, that you’re willing to give up for an amazing cause for a week?). There's already some fantastic auction items on our list that will go for bidding, including a week-long trip to Sydney or Hong Kong!

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All money goes into our campaign to raise $250,000 for Best Buddies International and their work toward inclusion for people with intellectual and developmental disabilities, leading up to our participation in the Best Buddies Challenge on 1 June 2019.

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Meredith, our Chief Motivating Officer, and her family always attend so if you haven’t met the “M” in the MTeam yet, this is a wonderful opportunity to introduce yourself and see one of those famous Mer Bear smiles in person.

“The gala has been an MTeam hallmark ever since 2016,” said Greg Lewis, Mer’s dad. “It is the highlight of my year. A spectacular evening filled with laughs, inspiration and delicious food! It also serves as the official launch of our spring fundraising season. Most importantly, it is an opportunity for our community to gather and continue our work to ensure all individuals, regardless of ability, have every opportunity to reach their full potential.”

Invite your friends and sign up as quickly as possible because spaces are limited and trust us, you don’t want to miss this one!

Candyce CarragherComment
Special Needs Siblings: Emily Spears

Meet Emily, middle sibling to Amy and Ben who were both born with FoxG1 - the same rare genetic condition as Meredith from the MTeam. We shared their mother Ann’s perspective recently, and she told us a lot about Amy and Ben and life as a family with special needs. Now, we hear from Emily, to find out what it’s like to grow up with two siblings on the severe end of the FoxG1 spectrum.

 
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MTEAM: Beyond what you've written in the essay, what are some of the other ways that being the middle sister to Amy and Ben impacted the way you grew up as compared to others your age?
EMILY SPEARS:
The one thing I remember thinking about over and over again about being Amy and Ben's middle sister was, "Why me?" It was very difficult growing up and watching my friends relationships with their siblings, and even though this is not a flattering word for me to use about myself, I was jealous. At the time, I felt like I was meant to have an older sister and everything that came with that; I wanted to steal her clothes, ask her about school, have her drive me to my friends’ houses, watch her go on her first date. In my mind, my parents wanted me to have an older sister and younger brother, and "it wasn't fair" that I didn't get to have those "normal" relationships. And while today, as a 29-year-old, I understand that this is not how life works, and I love and appreciate the relationships I do have with Amy and Ben, it is still difficult not having those "normal" relationships.

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What wasn't difficult was living my day-to-day life. While I can look back and think of certain days that were challenging, my overall memory of my childhood was easy, which my parents deserve full credit for. Even with two siblings who required full time care, I don't ever remember my parents letting that stop me from doing something I wanted to do. I played sports and they were at every game. I had friends who lived 45 minutes from me and they drove me there and picked me up. I needed help with my math homework and my Dad painstakingly worked through every problem with me. My parents also shielded me from being my siblings caregiver; to them, that was their job and not mine. Yes, I was their sibling, and I was expected to help, but I probably still don't know how to do half the things my parents do on a day-to-day basis to care for Amy.

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Over everything else though, my parents always made me feel special. Every Thursday night from the time I can remember until probably sometime in middle school, when life gets a little more hectic with homework, sports, etc, my parents and I would go on date night - just the three of us. I think it was good for me to have a couple hours a week when I had both of them on my own and I got both of their undivided attention, without being distracted or pulled away by Amy and Ben. Honestly, this is probably good for every child whether or not their siblings have disabilities, but especially so if they do.

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MTEAM: What are some of the ways in which you've bonded with your siblings over the years?
EMILY SPEARS:
Music and swimming. Unquestionably, those are the two things that Amy, Ben, and I got to bond over and enjoy the most, and luckily for us they were both abundant in our house. If you drop by our house, it doesn't matter what time of day it is, there will be music playing, and we don't discriminate on genre. From Jay-Z, to Dixie Chicks, to Shakira, to Nat King Cole, we’ve heard it all and loved it all. Music has always made Amy and Ben come alive, and if you've ever seen their joy and laughter, you know it is contagious. 

Swimming is our second great love. My parents put a pool in our backyard, I think when I was about 18-months-old, so we grew up swimming all summer long. I can't say that Amy and Ben love the "cold pool" as we affectionately call it, but they love the hot tub. For them, it is a release from their wheelchairs, and something that we got to enjoy together as a family.

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MTEAM: What would you say to other people who are currently struggling like you did in the beginning with what it means to be a sibling to someone with special needs?
EMILY SPEARS:
I know that it's hard, and confusing, and frustrating. Even though sometimes it may feel like you are alone in your struggle, you are not! There are other kids just like you whose siblings are not "normal" - find them, it helps! 

Above all else, look at how your sibling looks at you - he or she adores you! You are their world, their everything! Nobody looks at me or loves me in the way that Amy and Ben do. Their love for me is truly unconditional. They are never mad at me. They are never disappointed in me. They are never annoyed by me. They love me through and through, no matter what, always! They think I am perfect. And having someone look at you like that is a rare and wonderful gift. 

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Below, Emily shared an essay that she wrote in her senior year of high school in response to a prompt on Vanderbilt’s college application about diversity with her story of being Amy and Ben’s sister:

“I am the middle child with two severely mentally and physically handicapped siblings. From the moment I was born, I had to deal with diversity head on. I have endured the stares that came from strangers as I pushed either my brother or sister’s wheelchair through the mall. I have experienced a school where every child attending has some sort of disability. But most importantly, I have seen what happens when people stop staring and accept those like my brother and sister.

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As a young child, when my mom and I would take my siblings to the mall, I would more often than not leave the mall wishing that my brother and sister were “normal”. I always found it unfair that God chose me to deal with the difficulties that my brother and sister created. Every time my family would pass the wishing fountain in the mall, I would ask my mom if I could throw a penny in and make a wish. Of course, my mom would always let me, assuming that a child of six or seven would be wishing for a pony or a new Barbie, and after all, it was only a penny. But, without fail, every time I threw a penny in the fountain, I would wish for the same thing - that a miracle would transform my brother and sister into the siblings that I always wished I could have. Of course that never happened. As I grew older, I stopped throwing pennies into the wishing fountain - not because I realized that my wish could never and would never come true, but because that was no longer my dream.

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I believe that there is something in everyone’s lives that defines who they are as a person, whether it be a defining moment, accomplishment, or personal circumstance. In my case, my brother and sister are the people who have made me who I am. I realize now, after all those wasted pennies, that without them I would be a totally different person. Even though my siblings have provided endless hardships for my family, what is more important are the endless smiles and laughs we have gained in return. There is something about the way my brother’s smiling gaze follows my every move and the fit of giggles that some days my sister can’t seem to suppress that makes all the tears they have caused me seem unimportant. It has never been easy being their sister, but in the end it has always been worth it.

 
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I often find myself wondering what exactly it means to be “normal”. Is it that you are about average at everything you do? Or are you simply “normal” because you fit into the standard equation of what a human being is supposed to be? If either of those two cases describes what it means to be normal, I have no idea why I would have wished my siblings to be “normal”. Having handicapped siblings is what taught me respect and appreciation for all facets of my life. They are what taught me to be open to the world around me. Accepting the fact that my siblings are who they are for a reason is what made me who I am today. Because of them, I am more accepting of diversity. I have learned that diversity is not something to be scorned or shied away from; it is something that should be embraced because you never know what kind of affect those people could have on you - in fact, they may just shape who you are.”

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Candyce Carragher
10 Minutes With: Ann Zgorski

Meet Ann Zgorski, a mother of three children: Amy, Emily and Ben. Amy and Ben were both born with FoxG1, (the same rare genetic condition as Meredith the MTeam’s Chief Motivating Officer), though it took many years to find a diagnosis. Below, Ann tells us how her own life changed in many ways after her children were born, where her family found support and stories of the lives of each of her children.

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MTEAM: Tell us a bit about yourself. 
ANN ZGORSKI:
My name is Ann Zgorski and I live in the Baltimore Washington metropolitan area. I realized in answering this question that I’m not really the feature of my life; my children are. Ever since my first child Amy was born, it has been family first. My career with IBM came to a stop, my ability to be the social being I was became more difficult, and I needed to learn to reinvent who I was. Spending most of my time home certainly made me look around and say, ok, if I’m here, let’s make the most of it. So, to the delight of my family, I became a pretty accomplished cook! Lesson one, find the positives in the negatives. 

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MTEAM: What role has FoxG1 played in your life over the years?
AZ:
FoxG1 was not introduced into our world until Amy was 26, and Ben 22. For 26 years, we mottled through the world of seizures, gtubes, wheelchairs, IEPs, scoliosis surgeries, pulmonologists, gastroenterologists, etc.  Not having a diagnosis for all those years proved to be very difficult. We had NO BUBBLE TO FILL IN on the hundreds of forms we filled out. We couldn’t say “other”, because then they’d want a “write in”! Many services were restricted due to this...they didn’t know where to put us. So we kept on keeping on until May of 2013 when we got the call that there was a match (finally!)...FoxG1. We now could check “other”.  Lesson 2, don’t give up.

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MTEAM: Most of the FOXG1 families we speak with have younger children. At the age of 31, Amy is believed to be the oldest Fox in the US and Benjamin lived to be 25. That’s incredible. What sort of support and resources have you been able to lean on or access through the decades that may have assisted in their longevity?
AZ:
Yes, Amy is 31 and Ben was 25 when he passed away in 2016. Living in Maryland we had a very good school system that the kids attended until age 21. It was through this school that we found a support group, not only for me, but for my daughter Emily as well. The school psychologist would hold support groups monthly for the parents, but also in the evenings, once a month, she would hold support groups for the siblings of kids who attended this school. I wish that all schools could do this for not only the parents but for the siblings. It is very important to not feel alone as a parent or sibling of a disabled individual. 

It was also through this school that we found an individual willing to help us with respite for Amy and Ben so that my husband and I could have an occasional date, and go out with our daughter Emily. This too was very important to the upbringing of Emily, and of keeping our relationship as a couple, together. Support from family, friends and anyone in the community willing to help is certainly key to keeping normalcy in your life and the life of the others in the family.

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MTEAM: What have been some of your personal challenges and rewards along your journey as a mother so far?
AZ:
Obviously my biggest challenge as a mother was balancing two disabled children with all of their needs, along with the needs of my daughter Emily. I couldn’t have done it without the support of a very good husband and father to my children! On a personal level, another challenge would be also keeping up relationships with friends who don’t quite understand the demands that your family has on you.

My reward has been seeing Amy grow into a healthy and happy little girl. Even though she is 31, she still my little girl who we put to bed every night! My daughter Emily has been my pride and joy! To see her accomplish so much, and grow into a beautiful human being both inside and out, and to choose a profession that helps others....I’m so, so proud!

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MTEAM: Tell us a bit more about Amy! What does she love most? What makes her happy? What makes her uniquely Amy?
AZ:
As I said earlier, Amy is 31-years-old and lives home with her mom and dad. She has the ability of a 3 to 6-month-old and requires total care in every aspect of life. She is Gtube fed,  but also takes puréed food orally. We personally bathe and dress her and take care of all her personal hygiene needs. 

What makes Amy unique is her love for life!  She is the happiest little girl in the world! All Amy wants in life is to be loved, and to be involved in the activities of your life. She loves music, and I have to admit,  she loves the men in her life!

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MTEAM: What’s a typical day in Amy’s life like these days?
AZ:
A typical day in Amy‘s life is her attending an adult day care program where she swims and is involved in arts and crafts with one-on-one help. She plays games and enjoys the activities around her. She has friends at her program and is happy to attend her program daily. She comes home to us at night and has dinner, gets bathed, and hangs out with her family until it’s time for bed.

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MTEAM: Your middle daughter Emily is a sibling of two Foxes! Tell us a bit about her. What were some of the challenges for her as she was growing up? What have been the most positive aspects of her experience? How has it impacted her life generally?
AZ:
Our middle daughter Emily is now 29, married, and is a pediatric nurse practitioner. As parents, we always tried to make Emily feel special, in a home where her other two siblings took up the majority of our time and energy. Weekly, as much as possible, we took Emily on a “date” ....dinner out with mom and dad, that gave us all the opportunity to listen and stay connected to her world. We always emphasized to her that her siblings were not her responsibility, and that her responsibility was to do well in school and to have fun along the way! Emily did do well in school, and attended undergrad and graduate school at Vanderbilt university, earning her masters as a nurse practitioner. We could not be more proud that she chose to become a pediatric nurse practitioner! Her siblings taught her compassion, empathy, selflessness, awareness, and so many other great qualities. But above all, they taught her to Love!

Ben’s passing two years ago was one of the hardest moments as a family. We knew his respiratory issues had become his downfall, but his passing, none the less, caught us off guard! Emily insisted on delivering the eulogy for her brother’s funeral. There wasn’t a dry eye in the church and I couldn’t have been any prouder as her mom. I hope you get to know her perspective in the future.

Ann Zgorski Interview - FOXG1.jpeg

MTEAM: Tell us about Ben, what he was like growing up, what made him happy throughout his life and what qualities made him uniquely Ben.
AZ:
Handsome Benjamin was 25 when he passed away, on Amy‘s 29th birthday. He struggled for many years with seizures, respiratory issues and the obvious pain that was always difficult to diagnose. We tried to make him comfortable, but he rarely slept and was home sick a lot. A simple cold could keep him home for 10 days. He had an infectious laugh when he felt well. And you knew, he really just wanted to be happy. It broke my heart not to be able to make him comfortable in life.

So with his death, I could find comfort in knowing he was no longer in pain, and that it was finally at peace and with our God. I find myself more comfortable with my own mortality knowing that I will be with Ben again someday!

Ann Zgorski Interview - FOXG1.jpeg

MTEAM: If there was one thing you’d most like the world to know or understand about Amy, Ben or about FoxG1 generally, what would it be?
AZ:
FoxG1 is a rare genetic disorder,  and yet in its rarity, there is a huge spectrum of ability amongst the community of children within this syndrome. I believe Amy and Ben are on the severe end of the spectrum. There are FoxG1 children who can walk and communicate, which is an amazing thing for me to imagine.

Ann Zgorski Interview - FOXG1.jpeg

MTEAM: What key changes would make this a more inclusive world for people with FOXG1?
AZ:
Inclusiveness should be the goal of every person regardless of the bubble that they can, or cannot, fill in.

Candyce Carragher
Happy New Year & 2019 Goals

To all MTeamers and friends of the MTeam: We wish you a very happy 2019 and hope you all have a wonderful year ahead. We also want to take a moment to thank all of you so much for your support. We’ve made a real impact this year that you should all be proud of and, with your continued help, we will do that this year too.

January is always a time for reflection and for setting intentions for the coming year. Like many of you, we’ve been taking some time out to do just that.

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Here are three of our biggest goals for 2019 and some of our favorite memories from the past year:

GOAL 1: Awareness & Inclusion for People with Intellectual & Developmental Disabilities

Awareness is the first step toward a more inclusive world. When we’re able to meet and interact with other people who might be a bit different from us, fear of difference begins to fade. We see the abilities and strengths in people who are differently-abled and those qualities shine.

We share lots of love on our social media with the wonderful, huge community of people who were born with intellectual and developmental disabilities and their families. We also post stories and interviews on the MTeam blog to give readers a greater insight into the lives of the families who participate.

“M” is for Meredith and advocating for her is hugely important to us; we have a special place in our hearts for the FOXG1 community. One of the best moments in the history of the MTeam happened in November 2018. We are thrilled to have been able to donate a piece of innovative assistive technology called the Tobii Dynavox PCEye Plus to Meredith’s school that allows her and her other nonverbal classmates the ability to communicate, paint and do other activities through a system that tracks their eye movements. It was truly an incredible moment to launch this gift and we are enjoying following their progress.

How you can get involved: Send us a message on social media to volunteer to share your story in one of our interviews or be featured on one of our Tuesday Instagram posts under our hashtag #ThisWorldIsForEveryone. Share our content and help us spread awareness and kindness.

Some of our favorite blog posts and memories:

GOAL 2: Raise Money for Best Buddies International & Participate in the Best Buddies Challenge

We’re a Best Buddies Challenge civilian team, so we work year round to meet our fundraising goals for Best Buddies International before participating in the big event in Hyannis Port, Massachusetts the beginning of June: a 5k walk/run or a 20, 50 or 100 mile cycle.

Best Buddies is an amazing organization that works toward inclusion for people with intellectual and developmental disabilities at all stages of life, from facilitating friendships to providing leadership development opportunities to helping participants secure jobs in an integrated employment environment.

We’ve made a bigger impact each year and challenge ourselves to think even bigger as time goes on. The first year we were involved, in 2016, we raised about $12,000. In 2017, we raised $100,000. In 2018, we raised $150,000. This year, we’ve set the stakes even higher at a goal of $250,000. Each Friday, we check in with our progress on Facebook and Instagram, so everyone can follow along.

How you can get involved: Donate and/or encourage others to do the same. Even a small amount helps us as we inch toward our goal and we are grateful for any kind donation, big or small. We also welcome corporate sponsors. Please donate here, and feel free to message us with any questions! We are continually grateful for your support.

Some of our favorite blog posts and memories:

GOAL 3: Welcome More Members to the MTeam and Grow Our Community

We’d really love to see the MTeam continue to grow. We started with 6 members in 2016, grew to 30 in 2017, and 50 in 2018. Our goals is to have 100 members in our community for 2019.

We’re a fun bunch and family-friendly and, while our hub is Boston, we have members around the world. We welcome anyone who has an interest in supporting people with intellectual and developmental disabilities to join us. Come and walk or run or cycle in the Best Buddies Challenge and make a real impact with us in 2019.

How you can get involved: Join us and encourage your friends to do the same. If you’re an MTeamer, refer a friend and we’ll donate the first $100 to the fundraising campaigns for each of you. We’re also offering a donation of $100 for the next 20 people who sign up, so you’ll have a head start.

Meet a few of the MTeamers:

Candyce Carragher
10 Minutes With: Melissa Jones
 
10 Minutes with Melissa Jones - Lani's Mom (Pfeiffer Syndrome)
 

Meet Melissa Jones, a hardworking mother and grandmother who advocates passionately for her youngest daughter Lani who was born with a genetic condition called Pfeiffer Syndrome. Below, Melissa took some time to share a bit about the ins and outs of daily life for her family, tell us about Lani’s fiery personality and wild spirit and share a few ways that others could help make this world a more inclusive place for medically complex and fragile children.

 
10 Minutes with Melissa Jones - Lani's Mom (Pfeiffer Syndrome)
 

MTEAM: Tell us a bit about yourself and your family.
MELISSA JONES:
My name is Melissa. I have four children and four plus one grandchildren, (one is a bonus grandchild). I don't get to see them much because life is soooooo busy with Lani and my husband. We do this journey together but my daughter and her husband totally "get it" and understand how busy our new life with Lani is. My girls are 26 and 22, my boy just turned 13, and Lani is 2. My husband and I have been a thing for 17+ years, lol. We waited 15 years for Lani. We never did anything to prevent pregnancy and my husband, although he was pivotal in raising my older girls, always wanted his "set." Though we were told we'd "never get pregnant or carry to term," we had Kamden four years later and Lani 15 years later. Lani was born at 26.6 weeks, with fire in her soul and determination in her heart!!

 
10 Minutes with Melissa Jones - Lani's Mom (Pfeiffer Syndrome)
 

MTEAM: Your daughter Lani was born with Pfeiffer Syndrome. Can you explain a bit about what it is exactly for those who are unfamiliar and how it has manifested itself in Lani’s life in particular?
MJ:
Lani's Pfeiffer Syndrome hasn't been staged, but we are sure she has Type 1. Lani has craniosynostosis and craniofacial abnormalities that are directly related to her syndrome. Lani's knees and elbows are fused, along with her hips, making her gait a little different from "normal." Lani can't extend her elbows or knees fully, but she has adapted so well. Lani has multiple other comorbidities that make her super fragile and complex, medically. Lani is severely speech delayed and slow at meeting milestones, BUT she has always done things her way and her favorite phrase is: "I do'd it" meaning "I'll do it myself!"

 
10 Minutes with Melissa Jones - Lani's Mom (Pfeiffer Syndrome)
 

MTEAM: Tell us a bit more about Lani! How old is she? What does she love most? What makes her happy? What makes her uniquely Lani?
MJ:
Ha. Lani is 30-months-old. Lani is a fashionista!! She loves to pick out her accessories and hair bows at night, ready for the next morning. Lani LOVES her brother the most and coming in at a very close second is the show “Word Party”. Although Lani loves watching LuLu the panda dance in Word Party, she is not a fan of any animal. Lani LOVES her uni. 

 
10 Minutes with Melissa Jones - Lani's Mom (Pfeiffer Syndrome)
 

MTEAM: What’s a typical day in Lani’s life like?
MJ:
Typical day? Ha. Well, she goes to daycare 3-4 times a week which started out to be for occupational therapy, but the people in the center she goes to are her peeps!! She loves her Ms. Ariana, Ms. Randi and Ms. April and they love Lani!! We go to many speciality appointments, nearly two hours one way, but CHOA has Lani and her syndrome covered; they also specialize in craniofacial disorders which helps this mamma with her anxiety!! Lani has four different therapies twice a week and we both work full time, lol...

 
10 Minutes with Melissa Jones - Lani's Mom (Pfeiffer Syndrome)
 

MTEAM: What have been some of your biggest challenges and the best rewards along your journey with Lani so far?
MJ:
Our biggest challenge has been qualifying for any resources. Co-pays with our insurance are ridiculous, especially the first 3-4 months of the new plan period. I work in the healthcare industry and my husband works in shipping at a local factory; we both work very hard and do well for our little family!! Even though we both work hard, we can't qualify for anything because of our income. But, if you factor in Lani's special formula, her therapy co-pays, her speciality appointment co-pays, co-pays for surgery and routine radiology appointments to monitor her hydrocephalus and ICP, we are wayyyyyy below poverty level.

The biggest reward is being Lani's momma. Lani keeps me young and she gives me something internally, I've never had; so hard to describe. Her smile, her bravery and carefree, WILD spirit is so motivational and she really lights up ANY room she trots into!!

 
10 Minutes with Melissa Jones - Lani's Mom (Pfeiffer Syndrome)
 

MTEAM: What advice would you offer to other parents who are just finding out about a Pfeiffer syndrome diagnosis?
MJ:
While Lani's Pfeffier syndrome isn't as profound as others, it still takes us on a journey we never thought we'd be on. My best advice is to follow your instinct and ask the PROFESSIONALS questions; stay away from Google. It's not your friend, in any of this!! The special needs community is phenomenal. I'd suggest finding yourself a few good INSPIRATIONAL Mamma's and Papas space on blogs, on social media, and follow them. I've found so much reassurance in reading about others parents’/families’ stories and successes. It's really, really, really easy to get caught up in the negativity of any syndrome or complexity, so if you find yourself falling into the "hole" reach out!!

 
10 Minutes with Melissa Jones - Lani's Mom (Pfeiffer Syndrome)
 

MTEAM: How would you like to hear other parents respond if their own children notice and ask questions about Lani’s physical differences?
MJ:
My son plays football and we love being football parents. However, exposing Lani to the crowd can be challenging. We get the stares, whispers and snide comments and we know it's because people aren't "aware and informed." Yes, it hurts my heart when the 5-year-old walks up to my 2-year-old and laughs, pointing and saying: “Your eyes are so big; bug eyes”. Moreover, knowing that 5-year-old learned to do that from their environment hurts even more. Lani truly has no idea what they are laughing about and it doesn't register obviously, but it doesn't take the sting out of the encounter for me. So, I would hope parents would educate their children. Teach your children to be kind and say "hi," rather than stare and pick the other child apart.

 
10 Minutes with Melissa Jones - Lani's Mom (Pfeiffer Syndrome)
 

MTEAM: What key changes would make this a more inclusive world for children with Pfeiffer Syndrome?
MJ:
Having the ability to have access to the same resources as others, regardless of income or insurability, would help our kiddos tremendously!!

 
10 Minutes with Melissa Jones - Lani's Mom (Pfeiffer Syndrome)
 

MTEAM: One of your goals is to raise awareness for Lani and other medically complex or fragile children. What are some of the ways you’ve done this in the past or you hope to do so in the future?
MJ:
I have a Facebook page set up for Lani. People are curious by nature, so I make it a point to invite people to her page and I join groups on social media platforms and disseminate information about Lani and her syndrome to help raise awareness.

 
10 Minutes with Melissa Jones - Lani's Mom (Pfeiffer Syndrome)
 

MTEAM: What’s one thing you’d like the world to know about Lani or Pfeiffer Syndrome or medically complex or fragile children generally?
MJ:
Lani is amazing. She is gorgeous, fiesty and very smart!! She loves and hurts, just like any other 2-year-old. If you happen upon a complex, fragile child, smile and just say “hi”; teach your children to do the same... Don't stare: speak.

 
10 Minutes with Melissa Jones - Lani's Mom (Pfeiffer Syndrome)
 
Candyce Carragher
Meet the MTeam: Candyce Carragher

Candyce Carragher has been an integral part of the MTeam since the community came into being in 2016. She has dedicated many hours and days to keeping the team organized and making our events a success. Below, she takes a step back to share the reasons why the MTeam is important to her, how it has inspired her to take small actions in her own life that help to make the world a more inclusive place, and some of the ways that you can support the work of the MTeam beyond financial donations.

 
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MTEAM: Why is the MTeam and the Best Buddies mission important to you?
CANDYCE CARRAGHER:
The reason I became so heavily involved with the MTeam and Best Buddies was because of the Lewis Family. I worked with Greg at CAPA The Global Education Network and then met his wife Laura and their daughter, Meredith. It was my first time being around a person that has severe disabilities. Meredith was born with FOXG1 and is non-verbal and non-ambulatory with involuntary body movement.

As I got to know the family a bit and had various conversations, I realized that we typically focus on the physical/biological impact of FOXG1, but most people don’t think about the impact it has on a family. I have twins that are a few years older than Meredith and I put myself and their shoes and thought how lonely and isolated it must be to not have the same interactions every parent has with their child.

The MTeam and Best Buddies are all about spreading the word that people with disabilities are the same as everyone else; they just have different abilities. I’ve made it a personal mission of mine to interact in small ways with people who are different than me. It doesn’t take much and it’s free if you don’t have money to donate to the cause, although I’d like that too. Just smile. Meredith has a killer smile.

Meet the MTeam: Candyce Carragher

MTEAM: What’s one thing you’ve learned from being part of the MTeam community?
CC:
It reminds me how good people are in this world that can be scary and negative. The people on the MTeam come from all over the place and some never knew one another. They join for various reasons but at the base of it, everyone joins to do good.

Meet the MTeam: Candyce Carragher

MTEAM: What makes the MTeam special? What would inspire people to join you?
CC:
Oh my goodness, is this a fun group. I love the people of the MTeam and what it stands for – inclusion. If you don’t join for any other reason, the fun and inclusion would be enough. Lots of events and gatherings gives me the chance to be with like-minded people. And race day is amazing. It’s inspiring.

Meet the MTeam: Candyce Carragher

MTEAM: Tell us more about race day; what’s the atmosphere like at a Best Buddies Challenge event?
CC:
Extremely well organized, transportation to start lines and back to Boston from the Cape, showers and massage at the finish line, tons of food and drink. Great to get to meet Best Buddies participants and their families, the reason we are doing what we do. And the after party is through the roof! I had the chance to see Joan Jett and the Blackhearts two years ago and Rick Springfield last year. The entire team wears the same t-shirts (provided by the team) so you can see us everywhere. When we are together, all 50 or more of us, we are a sea of red. It’s cool when we are all on the dance floor. It’s a blast.

Meet the MTeam: Candyce Carragher

MTEAM: Do you have to be an avid runner or cyclist to join the MTeam?
CC:
You definitely do not need to be an avid anything! Much of the team is made up of walkers; some people run and walk a bit over the course of the 5k. There are young kids who ride, walk and run. Of course there are serious athletes involved, but it’s an open, friendly family event. The best part is meeting the people that are part of the Best Buddies programs along with their families. Meredith and her mom and dad run it each year. It’s what makes it all worthwhile. Personally, I used it as a training challenge for myself. It got me back to the gym and I’ve been going faithfully for almost two years now. I’m still not a runner or rider, but I feel so much better for it.

Meet the MTeam: Candyce Carragher

MTEAM: What’s your top one piece of advice for any MTeam newbies?
CC:
Become involved. Send John and the rest of the team an email. One of the goals of the MTeam is to get everyone involved all year long, not only on race day or at a few events. Plan a meet up. Find out which team members live in your area and plan a workout, a run or a ride. Other teammates already do this and would love another person to join them. Have your very own fundraising party at your home. Keep it simple and provide some food and drink and charge a small entry fee that will go towards your personal fundraising goal. So many fun ideas.

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MTEAM: What’s your best piece of advice this year for MTeamers who are returning for another round?
CC:
Share your knowledge with new members. Reach out and ask them to go for a run or ride. Keep inspiring people. I try to spread the word that people who do not have the same abilities than me are just different; they are still people who want friendship, love and community, just like me.

Meet the MTeam: Candyce Carragher

MTEAM: Share an MTeam memory that has been the most powerful and inspiring for you so far.
CC:
I learned from Laura, Greg and Meredith that people avoid them when they are out. They understand why, and so do I. People feel awkward and uncomfortable, they don’t know what to say, so they avoid them.

I acknowledged and accepted that I am guilty of this too. So now I make an effort say hi or smile at someone rather than avoiding. One day, I was in line at Walmart with my daughter. There was a mom behind me with her grown son in a stroller type wheelchair. I was nervous, but I turned around and said hello. He was trying to move his arms and his mom said, as only a mom would know, that he was saying hi to me. So I bent down and chatted with him for a second. I said hi. I asked him how he was. I touched his hand. I introduced my daughter. That mom cried because I acknowledge her child. I will never forget that moment for as long as I live.

Meet the MTeam: Candyce Carragher

MTEAM: How can you support the MTeam if you don't have the means to donate and aren't ready to actually join the team?
CC:
There are tons of ways to support the team if you don’t have the means to do it financially! I’ve gotten creative over the past couple of years. The easiest way is to like and follow MTeam pages on Facebook, Twitter and Instagram and then share our posts. The MTeam has a fantastic social media presence with really great blog posts and articles on lots of topics ranging from raising children to running to riding and health tips in between. Next, ask your own social media network to like and follow us. This might seem small and insignificant, but the more people who share this information, the more people we reach. Social media is a powerful tool and if nothing else, it normalizes people who have different abilities than me.

A second way is to get creative with fundraising. The holidays are here! Ask folks to donate to the cause. Create an email or share the donation link on your own social media. If you are having a holiday party, ask for $5.00 donations (or more!), leave a big jar out with a sign/flyer, pass the hat. Kids love to help. Have them create a poster encouraging donations. Use pictures of Meredith so people can see who they are helping. Share your own story about why this has impacted you and created a desire to help. There are so many ways to get involved!

Meet the MTeam: Candyce Carragher

MTEAM: Have you seen the MTeam make a direct impact on Meredith's life specifically?
CC:
Oh my goodness, YES! In general, it’s brought awareness to so many people and through that, more acceptance of people that are different and therefore less loneliness for Meredith and her parents, Greg and Laura.

Specifically, there was an amazing donation the MTeam just made to Meredith’s school at the end of November. This piece of technology that translates eye movements into speech will allow her and the other kids who are non-verbal to communicate their wants and needs for the very first time. I mean seriously, can you imagine having to guess each day what your child wants? Now for the first time, they can actually express it themselves. That boggles my mind. It’s just an amazing gift.

Candyce Carragher
10 Minutes With: Natalie Weaver

Meet Natalie Weaver, a mom of three who advocates incessantly at a national level for her daughter Sophia and other kids who have disabilities or chronic illnesses. One of the areas where she puts much of her focus is facial deformities. She fights hard for change that will not only show through in the country’s laws but that will also bring about much needed acceptance, inclusion and normalization for these children. Below, Natalie tells us Sophia’s story, from her medically-complex history to her sweet and sassy personality, talks about her advocacy and the two organizations she has formed for this purpose, and shares her advice for parents who are newly receiving a special needs diagnosis.

 
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MTEAM: Tell us a bit about yourself and your family.
NATALIE WEAVER:
My name is Natalie Weaver. I am married to my wonderful and supportive husband Mark Weaver and we have three beautiful children: Sophia (10), Alex (8) and Lyla (5). I’ve wanted to be a mom since I was a little girl. I’m an artist and before kids, I used to show my art in a gallery for several years. I am a healthcare and patient/parent advocate. I fight to protect healthcare for kids with disabilities and chronic illness and I also fight for acceptance, inclusion and normalizing disabilities and facial deformities.

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10 Minutes with Natalie Weaver.JPG

MTEAM: We love following your adventures with your sweet daughter Sophia on social media. For those who are reading your story for the first time, can you help us understand a bit about Sophia’s complex medical history?
NW:
I had a typical and healthy pregnancy. Since Sophia was my first, I was extra cautious and even cut sugar and caffeine out of my diet!

I didn’t find out that something could be wrong until an ultrasound at 34 weeks pregnant. I was rushed to a specialist where Sophia was examined through an ultrasound for two hours. I found out that day that she’d be born with deformities to her face, hands and feet and that she might not survive birth. I had four weeks to carry that heavy weight. It was a very difficult time.

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Sophia was able to breathe on her own and stayed in the NICU for a month where she received her first surgery at nine days old. For a while, we thought the only challenges would be her deformities but with each year came a new diagnosis. There is no one else in the world like Sophia so we learn as we go. She began to talk, play and do all the things we had hoped but then slowly began losing those skills. We found out she has Rett syndrome, though her mutation on the MECP2 gene is one never documented, again a unique case. This neurological condition comes with seizures, tremors, loss of walking, talking, use of hands, and the ability to do anything on her own. While it took a lot from her, it did not take her happiness, her love, her positivity or her sweet spirit. Sophia was also diagnosed with a rare immune deficiency and type 1 diabetes. She has undergone 28 surgeries to improve her quality of life and to decrease pain. She requires full time care.

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MTEAM: Tell us a bit more about Sophia and her personality! What does she love most? What makes her happy? What makes her uniquely Sophia??
NW:
Despite what she goes through, she is the sweetest little human ever. She is the center of our family. She has an attitude and rolls her eyes at me quite often. She can’t talk but has many ways to communicate with us. She loves to cuddle and spend time with family. Her favorite color is green and she has a laugh that will melt all your problems away. Sophia goes through a lot, but as soon as the pain or challenges subside, she is happy, positive and laughing again. She is the strongest person I know and has a high tolerance for pain. 

10 Minutes with Natalie Weaver.JPG
10 Minutes with Natalie Weaver.jpg

MTEAM: What’s a typical day in Sophia’s life like?
NW:
Sophia requires care from others for all of her needs. We have nurse aides who help with a lot of the day to day things like getting dressed, bathed, fed through a feeding tube, etc. We help her have a fun day filled with music, adapted dancing, arts and crafts and enjoying the outdoors. She has a busy day. She has occupational, physical and speech therapy twice a week and a teacher that comes to the house. She works hard throughout the week. She sleeps in on the weekends and gets to chill with her family for movie night and other fun family time. 

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MTEAM: What have been some of your biggest challenges and the best rewards along your journey with Sophia so far?
NW:
The biggest challenge for me has been not knowing how long I’ll have with my sweet girl. I know I’ll lose her one day and it’s something I’ve had to learn to peacefully live with. It also used to be hard for me to face the cruelty we’ve received because Sophia looks different. I kept private for the first 8 years of Sophia’s life because the pain of the reactions and cruelty were too much for me to handle. I’d try to build up my courage to go out to do simple things like run errands, only to be knocked down again by the cruelty of others. I’m proud that I finally stood up against the hate and I live life out in the open with my beautiful girl that I’m so proud of.

The biggest rewards are being in the presence of Sophia, and learning so much about life, living in the moment and unconditional love. She has helped me find my voice and my true self. 

10 Minutes with Natalie Weaver.jpg
10 Minutes with Natalie Weaver.JPG

MTEAM: What advice would you offer to other parents who are just finding out about a similar diagnosis? What about some advice to the parents of other children who take notice of Sophia’s physical differences?
NW:
Advice to parents with a newly diagnosed child: It is very difficult in the beginning, but you will get through this; you will find strength you never knew you had and you will know a love deeper than any love you’ve ever experienced before. Times will be hard but there will be amazing and happy moments. The happiness will feel so much sweeter. 

Advice to other parents: Teach your children about disabilities and facial deformities as early as possible. Teach acceptance and inclusion. You can find stories of disabled people and people with facial deformities on the internet and share it with them and let them ask questions. Do not shush them away from disabled people or people with facial deformities. Teach them to smile and say hello. 

10 Minutes with Natalie Weaver.JPG
10 Minutes with Natalie Weaver.jpg

MTEAM: You have embarked on an incredible journey advocating for Sophia and other medically-fragile children. What key changes are you currently fighting for that would make this a more inclusive, safer or generally better world for them?
NW:
I’m always fighting to protect healthcare and more specifically Medicaid and Preexisting condition protections. I’ve also fought against Twitter to protect disabled children on their platform. I fought for months to get them to include ‘hate towards disability’ on their reporting tool so people can properly report hate and discrimination. I hope this has made a difference, but I’m not sure how good they are at enforcing it. I share our lives on social media to give people a glimpse into the life of a profoundly disabled child. Families like mine aren’t heard from very often and it’s important we have a voice. It’s important that we are seen so that change and acceptance can occur. 

10 Minutes with Natalie Weaver.jpg
10 Minutes with Natalie Weaver.JPG

MTEAM: You’ve also set up Sophia’s Voice and are the co-founder of Fragile Kids NC. Can you tell us a bit about both of these organizations and what you hope to accomplish through each of them? 
NW:
The first organization I am the Co-Founder of is Advocates for Medically Fragile Kids NC. This organization began when our state was trying to reduce services for thousands of medically complex kids in NC. I along with two other moms, and co-founders, Jenny and Elaine stopped this from happening. Jenny and Elaine have done an amazing job of being a part of meetings with decision makers in NC to ensure the safety of NC’s medically complex kids. They are amazing and keep it running while I’m advocating nationally. They call me in when needed to spotlight things in the media.

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Sophia’s Voice is my new organization. As I built a large community around me of people who care, people began to reach out to me for help and I realized I could raise money quickly and help them get the medical equipment they need or to connect them with resources. Sophia’s Voice also tries to bring joy and respite to caregivers and disability activists who are working tirelessly. We also support individual activists who fight for healthcare and disability rights in various ways. 

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MTEAM: Sophia has a very active and supportive following on social media now. How has this been important throughout your journey with her so far?
NW:
The large and supportive following that I have on social media has been key in being able to get stuff done! Social media pressure works! It’s also been the most amazing thing to once have been so isolated and to now have a tremendous amount of support throughout the entire world. It has connected me with other families who understand and it has helped me open up. Now I have I wonderful supportive group of friends and a loyal and loving support system. 

10 Minutes with Natalie Weaver.PNG
10 Minutes with Natalie Weaver.PNG

MTEAM: If there was one thing you’d most like the world to know about Sophia, what would it be?
NW:
I would most like the world to know that Sophia is an incredibly strong and amazing human being who is loved fiercely and unconditionally. Sophia is the true definition of beauty, strength and love. Those who take the time to really know and see her are changed for the better. 

10 Minutes with Natalie Weaver.JPEG

Follow Natalie and her family on:

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Candyce Carragher
The MTeam's Donation of Innovative Tech Gives Nonverbal Students a Voice

It was an emotional morning. The classroom at Meredith’s school in Norfolk, MA, was full of happiness, love, joy and wonder as we gathered there with a small group of friends, family and the wonderful team who facilitate the learning experience for Mer and her classmates.

Wrapped up in a big red bow at the center was a gift from the MTeam: a piece of innovative assistive technology called Tobii Dynavox PCEye Plus.

The MTeam's Donation of Innovative Tech Gives Nonverbal Students a Voice (FOXG1).JPG

We gathered round and Mer cut the ribbon with her special adaptive scissors. This marked the beginning of a big day, a day that 10-year-old Mer, along with her classmates Kaitlyn and Aiden - all three of whom are nonverbal - would be given an opportunity to communicate for the first time.

And it will be a gift that keeps on giving, extending beyond them to their other classmates and on to the students who pass through the Bi-County Collaborative (BICO) program classroom at King Phillip Middle School in the future.

For those of you who have stumbled upon us for the first time, Mer is the MTeam’s Chief Motivating Officer. Our motto as a Best Buddies Challenge team is “Miles for Smiles” because her smiles light up our hearts and what we do is because of, for her, her. Our “M” is for Meredith.

Mer was born with FOXG1, a rare genetic condition (only about 350 people worldwide have been diagnosed) that means, among many other things, that she is both nonverbal and unable to control her body movements. Besides the messages she is able to convey through her beautiful smiles, Mer has never been able to communicate even her most basic needs to her parents.

And so we are incredibly privileged to have been able to do something that will change her world as she knows it.

 
MTeam Donation of Tobii Dynavox PCEye Plus.jpg
 

The Tobii PCEye Plus system has been embraced by the school and the students and was officially launched on the morning of November 27, 2018 for them to use. Among other things, it will be used to enhance their learning activities. It’s the world’s first device that combines advanced eye tracking, switch and infrared control with speech recognition. The way it works is fascinating: students can move a mouse on a screen and select items using just their eyes. The system then translates those eye movements into a voice or a sound, like you’ll see in the video above as Kaitlyn plays the xylophone.

MTeam Donation - Tobii PCEye Plus.JPG

Mer and her friends are in the process of learning how to use the new technology now, but once they have mastered the basics, there’s much to explore. It’s capable of everything from web browsing to practical tasks like making spreadsheets to many means of creative expression.

“This was possibly one of the most incredible and beautiful days of my life. I witnessed a miracle,” said MTeam captain John Christian. “Everybody deserves access to community, to love, to engagement. When we were able to actually present this gift to BICO and to the school, it’s just one small piece of what we’re trying to do with the community that we serve. Right now, Mer’s playing games, but the future is to tell people, ‘I’m hungry’, ‘I’m in pain’, ‘I’m tired’, ‘I love you’, all the things that we take for granted every day. This has been the most profound MTeam moment. If you ever needed something to motivate you for our 2019 campaign, it’s what happened here today. From the heart, this is what the MTeam is all about.”

 
MTeam Donation - Tobii PCEye Plus.jpg
 

Thanks to all who have made this possible. We are listening and can’t wait to hear what Mer has to say as she begins to tell her story!

Watch our video embedded above, and this footage aired on NBC News for more.

Please consider sharing this story, joining the MTeam or making a donation.
Learn more about our Best Buddies Challenge team, sign up or donate in the link below:

Candyce Carragher
10 Minutes With: Ali Collins

We’ve spoken a lot about FOXG1 here on our blog and on our social media. It’s the genetic condition that Mer, the MTeam’s Chief Motivating Officer (and the reason for that “M”), was born with and continuing to raise awareness for her family and others is important to us.

 
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With November being FOXG1 Awareness Month, we thought it would be especially fitting to share the story of another family who have a daughter that was also born with FOXG1. And so we’d like you to meet Ali. Read on as she talks in detail about the lovely Moe in particular, what their family’s life is like day to day, some of the ways the have fun together, and a few things that would make the world a more inclusive place for Moe and other children who were born with FOXG1.

Photo by  Leah Britton Photography  in Jacksonville Florida

Photo by Leah Britton Photography in Jacksonville Florida

MTEAM: Tell us a bit about yourself and your family.
ALI COLLINS:
My name is Ali Collins. My husband, Alec, and I have three wonderful and beautiful children. Moseley is 6 and our little fox. Tempest is almost 3 and a wild child just like her name would suggest. Asher is 18 months and always smiling. We love to listen to music and dance. We make the most of the things we can enjoy together. My husband is a citrus farmer and the world's best dad.

Photo by  Leah Britton Photography  in Jacksonville Florida

Photo by Leah Britton Photography in Jacksonville Florida

MTEAM: Your daughter Moseley was born with FOXG1. How common is it? Can you explain a bit about what it is exactly and how it manifests itself - in Moe’s case in particular?
AC:
Moseley is one of 375 FOXG1 patients in the entire world. FOXG1 Syndrome is a rare neurodevelopmental disorder caused by a mutation of the FOXG1 gene, which impacts brain development and function. Moe’s symptoms are seizures, lack of limb control, and trouble breathing. She is non-mobile and non-verbal as well. Her most severe symptom is impossible adorableness!

Photo by  Hanna Hill Photography  in Durham North Carolina

Photo by Hanna Hill Photography in Durham North Carolina

MTEAM: Tell us a bit more about Moe!
AC:
Moe is six and the biggest homebody. She loves her bed and a good cuddle. She has loved to listen to Motown since she was born. Moe has her own language that she speaks with her eyes. It is uniquely hers. It's a great privilege to sit and talk with her every day. Caring for her can be stressful; but as soon as I hold her in my arms, it all goes away. She is a strange little soother. I guess what I’m trying to say is almost everything about Moseley is unique. We’re in love with her.

Photo by  Hanna Hill Photography  in Durham North Carolina

Photo by Hanna Hill Photography in Durham North Carolina

MTEAM: What’s a typical day in Moe’s life like?
AC:
Moe is fed by a G-tube and so every morning before school we have to give her her medicine and make sure she's off the pump in time for school. At school, she gets physical, speech and occupational therapy. She also gets to play and learn with her friends. When she comes home, we usually cuddle for a bit and listen to an audiobook or some music. She loves to watch her little sister and brother play before bedtime. Then we go back on the pump and get ready for bed.  She has to take different meds at night and we usually check her pulse ox levels and make sure her breathing is ok. If not, we give her a breathing treatment and get prepared for a hospital visit. We've been lucky to not have to go in a little while. Nighttime is always hard on her. She wakes up a lot and cries. She sleeps about 4 to 6 hours a night. We’re still not sure what that's about. With a kid like Moe, we have to just go down the list and check things off until we figure out what’s wrong.

Photo by  Leah Britton Photography  in Jacksonville Florida

Photo by Leah Britton Photography in Jacksonville Florida

MTEAM: Tell us a bit about Moe’s siblings and their relationship with her. What do they love to do together? Do you have any advice for other parents on how to explain a diagnosis like FOXG1 to a sibling?
AC:
Moe has a little sister and a little brother and they love their big sister. Moe does get annoyed with them as any big sister would, but they seem to get along ok. Tempest is still young, but knows not to play rough with her and not to touch her medical equipment, but that’s about all she understands right now. It’s kind of amazing how she sees Moe just as she is - beautiful and perfect. Temps always reminds me to see past the body and look at her soul.

I don’t have any advice except for teaching your children to be involved. We try not to separate them too much and let them all interact with each other like typical children. I’m still new at this and am learning as I go, but it’s a fun ride with all my little monkeys.

Photo by  Hanna Hill Photography  in Durham North Carolina

Photo by Hanna Hill Photography in Durham North Carolina

MTEAM: What have been some of your biggest challenges and the best rewards along your journey with Moe so far?
AC:
The biggest challenge is fighting for what Moe needs. It’s an endless battle to advocate for our children, but we do it. We get up and we fight until it’s closing time. Then we lay down at the end of the day exhausted and overwhelmed just to do it all over again in the morning. Everything is hard. Fighting for anything she needs - from care to equipment - never gets easier, but when I see her smile just for a minute, I know it was worth it. Every snuggle or hum she gives in appreciation is the reward. We fight big to appreciate the small.

Photo by  Hanna Hill Photography  in Durham North Carolina

Photo by Hanna Hill Photography in Durham North Carolina

MTEAM: What advice would you offer to other parents who are just finding out about a FOXG1 diagnosis?
AC:
The first thing I would say is welcome to the family because that's what you become when you have a child with a rare disorder. The second and the most important; ASK FOR HELP. You can't do this on your own and if you could, why would you want to? Get a community. Reach out to other parents. We’re here and we want to help. Third, take care of yourself. The best thing I’ve done so far and something I regret not doing sooner is aggressively pursuing myself. Take time to love yourself and to take care of you, or you won’t be able to care for your little one.

Photo by  Leah Britton Photography  in Jacksonville Florida

Photo by Leah Britton Photography in Jacksonville Florida

MTEAM: What key changes would make this a more inclusive world for children with FOXG1?
AC:
Remembering that first and foremost they’re children. We say children with FOXG1 Syndrome, not FOXG1 children. They’re people first and if we learn to love them as people first, the rest will follow. The stigma of disabilities is widespread and often we do not prepare our children to interact with kids like Moe. Teach them young to love and the world will follow.

Photo by  Hanna Hill Photography  in Durham North Carolina

Photo by Hanna Hill Photography in Durham North Carolina

MTEAM: What have been some of your favorite, most supportive or most useful resources during your journey with Moe? Any resources you’d recommend to others?
AC:
First, my husband. No one will ever understand what you are going through with your specific child like your partner. Nurture that relationship; it’s the strongest weapon in a lifelong battle. After that, it would have to be my family. Their support has been my lifeline.

As far as resources, find a support group online and get to know those parents. Lean on them; that’s what they’re there for. I haven't had any books really stand out to me and I try to stay away from the internet. It can be a scary place.

Photo by  Leah Britton Photography  in Jacksonville Florida

Photo by Leah Britton Photography in Jacksonville Florida

MTEAM: What’s one thing you’d like the world to know about Moe or about FOXG1?
AC:
She a little girl not a china doll to just be looked at. Love her like you would any 6-year-old. FOXG1 is just one little thing about her. It’s not everything.

Photo by  Hanna Hill Photography  in Durham North Carolina

Photo by Hanna Hill Photography in Durham North Carolina

Connect with Ali and her family on:

YouTube
Facebook
Twitter
Instagram

A Best Buddies Story: Timothy Rosario

Meet Timothy Rosario, who is thrilled to have become a Best Buddies Ambassador this spring. He’s looking forward to the difference he can make by being part of this amazing organization, by giving speeches, encouraging more people to join and helping out at special events.

 
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Below, Tim talks about why he was chosen to be a Best Buddies Ambassador, his aspirations for the future and one of his favorite Best Buddies memories so far.

Best Buddies Ambassador Timothy Rosario

MTEAM: Tell us a little bit about yourself!
TIMOTHY ROSARIO:
 My name is Tim Rosario. I am from Somerset Massachusetts. Last year, I was involved in Best Buddies. I am also attending Bridgewater State University. I had gotten into a special Program and it’s called the Inclusive Concurrent Enrollment Initiative. Besides college, I like to bowl and hang out with my friends. 

Best Buddies Ambassador Timothy Rosario

MTEAM: When and how did you become an ambassador for Best Buddies?
TR:
I had gotten asked to become an Ambassador on April 7, 2018, because I had taken a Public Speaking class. 

Best Buddies Ambassador Timothy Rosario

MTEAM: What are some of the coolest things you (will) get to do as an ambassador for Best Buddies?
TR:
I will get to make speeches to other people if they asked me to and attend special events that they will have.

Best Buddies Ambassador Timothy Rosario

MTEAM: What do you love most about the Best Buddies? How have they helped to support you?
TR:
I absolutely love the Best Buddies staff. They helped me make lots of new friends. 

Best Buddies Ambassador Timothy Rosario

MTEAM: Have you had any particular challenges or goals in your life that being involved with Best Buddies has helped you overcome or achieve?
TR:
Someday I want to work for Best Buddies through the job program that they have.

Best Buddies Ambassador Timothy Rosario

MTEAM: How was your experience at the most recent Best Buddies Leadership conference? What did you learn while you were there? 
TR:
This year, I had attended the annual Best Buddies Leadership Conference all by myself. I met Jack Mayor (another Best Buddies Ambassador) while I was there. They had helped me write my speech.

Best Buddies Ambassador Timothy Rosario

MTEAM: Have you met anyone through Best Buddies who really inspires you? Who?
TR:
Back in 2017, I attended the Pass the Torch Conference. There I met a friend and his name was Paul Landry. He became really close to me and to this day we talk, by texting or Snapchat.

Best Buddies Ambassador Timothy Rosario

MTEAM: How do you hope to make a difference through your role as a Best Buddies Ambassador? 
TR:
I will try to recruit more people to do Best Buddies. Some people have never even heard of Best Buddies.

Best Buddies Ambassador Timothy Rosario

MTEAM: Do you have a favorite memory from your time involved with Best Buddies?
TR:
Last year was the first year doing Best Buddies at my local high school. On September 23, 2017, we had the Best Buddies Friendship Walk, and if you raised $500 or more, your name was put in the raffle. I won that raffle so the Best Buddies staff came to my high school to proudly present a football signed and autographed by Tom Brady. 

Best Buddies Ambassador Timothy Rosario

MTEAM: What would you say to someone who was thinking about supporting Best Buddies but is not sure? 
TR:
I would say you should join Best Buddies because you never know you can impact someone’s life.

Candyce Carragher
10 Minutes with: Jennifer Leonard

As November is FOXG1 Awareness Month, we thought it would be a great time to introduce Jennifer Leonard, the Director of Family Advocacy for the International FOXG1 Foundation.

 
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Below, she tells us a bit about what her roll involves, give some solid advice for families finding out about a FOXG1 diagnosis and shares a little bit about what life is like with her family, including her daughter Abigail who was born with FOXG1.

Abigail in her new to us wheelchair van after fundraising for over one year!

Abigail in her new to us wheelchair van after fundraising for over one year!

MTEAM: Tell us a bit about yourself and your family.
JENNIFER LEONARD:
My name is Jennifer Leonard. I'm from Pennsylvania, transplanted to Massachusetts. I'm married to Jed and we have two children, Abigail, (age 11) and Corinne, (age 9). I enjoy reading when I have time, travelling (although there's not a lot of time for that right now!). My guilty pleasure is watching General Hospital.   

Abigail and Meredith Lewis at Miracle League

Abigail and Meredith Lewis at Miracle League

MTEAM: You hold an important position as the Director of Family Advocacy for the International FOXG1 Foundation. For those who have never heard of FOXG1, can you help us understand a bit about what it is and how it manifests itself?
JL:
FOXG1 Syndrome is a rare neuro-developmental disorder caused by mutation on the 14th chromosome. It impacts brain development and function and can be a cause of seizures. 

Most cases of FOXG1 are considered de novo, meaning they just occurred during the early development in utero. In some cases, a parent can be a carrier, but most cases are non inherited and have no family history.

FOXG1 can cause lack of speech, inability to control body movements, vision issues. Many of the people diagnosed with FOXG1 Syndrome cannot walk, talk, and cannot take care of their daily needs on their own.      

Abigail and her sister Corinne

Abigail and her sister Corinne

MTEAM: November is FOXG1 Awareness Month. Can you tell us more about what the International FOXG1 Foundation does, perhaps what is in focus at the moment and some of its achievements?
JL:
The International FOXG1 Foundation's (IFF) mission is to provide hope and support to the families of individuals with FOXG1, to fund research and to bring awareness and education to the public. IFF helps our families understand all the information that gets thrown at them with a FOXG1 diagnosis, from the symptoms that can come with a diagnosis and any new medical information that is available. 

One of the things that the IFF has been able to do has been to fund the creation of what is called a knockout mouse - basically a mouse that can be bred to have FOXG1 so researchers can understand how FOXG1 affects the mouse and then can understand the characteristics of the disorder. It can help with treatments for the symptoms of FOXG1. 

IFF recently entered into contract with the Harvard Brain Tissue Research Center (HBTRC) and is working with Boston Children's Hospital on research projects. IFF is involved with a Consortium where clinicians are collecting information for a National Institute of Health funded natural history study of the related disorders. 

A long term goal is to open a clinic where clinicians will be able to see patients with FOXG1 in a sort of "one stop" visit. Meaning the patient will see all their specialists in one day of visits instead of making multiple appointments on different days.

Abigail as "Dizzy" from Disney Descendants 2 for Halloween 2018

Abigail as "Dizzy" from Disney Descendants 2 for Halloween 2018

MTEAM: What is a typical day at the International FOXG1 Foundation like for you?
JL:
One of my main roles as Director of Family Advocacy is to work with families to make sure they have what they need. I like to try and connect families with other families in their geographic location. I also try to help when a family needs to find a medical professional that can treat their child. I'm the liaison for IFF with the Natural History Consortium which allows me the ability to get to know others from different foundations and the clinicians and researchers involved in consortium work. I'm lucky to live in an area where there are so many doctors and researchers interested in our kids.

 
Abigail in her dance recital costume

Abigail in her dance recital costume

 

MTEAM: How has FOXG1 touched your own life?
JL:
When you're pregnant with a child, you dream of all the things they'll do, how they'll grow up and the way they'll be. Having a diagnosis of FOXG1 changes all of that in a heartbeat. At the time of Abigail's diagnosis, there was very little information for parents. Dr. Google wasn't much help; if anything, it makes it worse. Finding the parent group and the International FOXG1 Foundation opened our world up to other people who "get" our life and help celebrate the all the little milestones that others take for granted.
NOTE: Click through to a more in depth version of Jennifer and Abigail’s birth story and diagnosis.

Abigail's First Communion family picture

Abigail's First Communion family picture

MTEAM: Tell us a bit more about Abigail and her personality!
JL:
Abigail is 11-years-old and has a very big personality. She loves her sister, her cats, playing with her friends. She also loves a good joke and listening to music. She can be naughty when she wants to (she loves to pull items off tables or get a little fresh if someone is standing too close to her reach!). Telling her to stop, or no, gets a big grin of defiance. In general, Abigail's a pretty happy kid, but she's getting into the "tween" years and it's fun (and annoying!) to see the typical tween attitude come out. Her unique ability to connect with others with a smile is pretty fun to watch. Even the grumpy person can't resist an Abigail smile and giggle. If Abigail likes someone, she'll do her best to get that person's attention and will intentionally listen to them. If she doesn't like you, you'll see the shoulder shrugs, head down and no smiles. She can be pretty convincing when she wants, especially if she wants something!

Halloween 2018 in Abigail's classroom with her friends and awesome teachers and physical therapist!

Halloween 2018 in Abigail's classroom with her friends and awesome teachers and physical therapist!

MTEAM: What have been some of your biggest challenges and the best rewards along your journey with FOXG1 so far?
JL:
There are always ups and downs with any person who has such complex medical issues. The past 12 months have been very challenging. Abigail went from being a kid that ate and drank pretty much everything we gave her to a child that needed a feeding tube placed, a swallow study that showed she was aspirating thin fluids, food aversions and gagging, new and uncontrolled seizures, and a GI issue the doctors thought might need surgery. She had four inpatient stays in a 365 day time frame, which for her, is the most she's ever had within a one year. Trying to juggle her care and the needs of her younger sister, plus everyday life has been very stressful. Seeing the progress she's made, even if it's just a little, since she started feeding therapy is probably the most rewarding. There was a mini celebration when we found out she was finally on the weight growth chart for her age!

Abigail and Santa 2017

Abigail and Santa 2017

MTEAM: What advice would you offer to other parents who are just finding out about a similar diagnosis?
JL:
I always tell new parents to take a deep breath. It's a lot to take in and make sense of. I tell them to cry, rage, do whatever they need to do, then pick themselves up and stand tall. The journey is a marathon, not a sprint. The lows are bad, but the highs are awesome. Find the team that works for their child, whether it be family, friends, medical people, other special needs parents, etc. Those are the people that will help in the long run. Their child is still the same child they were before the FOXG1 diagnosis, nothing about them changes, it just adds a label to the why. I tell them to seek out the other parents; they're in the same boat and usually know how to get around things and find the services and medical things that may be needed. All our parents in the FOXG1 community are knowledgeable about their child and what works for them. That something may work for another person too. Don't hesitate to ask questions, challenge doctors if you need to, and most importantly, follow that Mom gut, intuition. If something seems off, it usually means something is going on.

 
Abigail and Corinne

Abigail and Corinne

 

MTEAM: What are some of the key changes that would make the world a more inclusive place for children born with FOXG1?
JL:
Listen to the parents, the people that know the kids/adults with FOXG1. Invite us to the parties, picnics, play dates, even if it seems our kids can't do what you want to do, that doesn't mean they don't enjoy the company and the siblings of kids with FOXG1 definitely enjoy it. Our world got a lot smaller when the diagnosis came; reach out to us. We may not always seem like we appreciate it, but we do. Physical disability doesn't define a person.

Abigail as Jean Driscoll on 4th grade Wax Museum Day at school

Abigail as Jean Driscoll on 4th grade Wax Museum Day at school

MTEAM: If there was one thing you’d most like the world to know or understand about Abigail or about FOXG1 generally, what would it be?
JL:
Abigail is so smart, as are her friends with FOXG1. These kids are locked in a body that doesn't want to work the way they want it to work. Treat her like a typical 11 year old, ask her questions and wait a few seconds for her to respond. You won't be sorry when you get that big smile or a definite head nod yes or no. It's so worth it if you take the time.  

 
Chilling at the Stoneham Zoo

Chilling at the Stoneham Zoo

 
Candyce Carragher
Our Favorite Sources for Healthy Recipes

Ah, November. With cold, damp weather already settled in, pumpkin spice latte season in full swing and any resolutions we started the year with long forgotten, we’re finding ourselves tempted by the decadence of rich food connected to the autumn and winter months and the ease of ordering a pizza and wings on a rainy night.

 
The MTeam: Our Favorite Sources for Healthy Recipes.png
 

So we’re getting ourselves excited about cooking healthy again (which, if you watch video number 5 in this blog post, you’ll know why) and making feel-good, delicious meals by re-visiting some of our favorite places to find inspirational - and often very easy - recipes to try. Bon appetit!

MTeam Healthy Eating Blogs.jpg

BLOGS

  • AMBITIOUS KITCHEN. Monique runs a beautiful health-focused food blog with clean photography, creative recipes and feel good inspiration.

  • LOVE AND LEMONS. Chicago-based couple Jeanie and Jack lean toward vegetarian cooking for their family, so lots of delicious veggies to be found here. Search by ingredient or find inspiration by season.

  • SASSY KITCHEN. Julia presents the world with her seasonal, wholefoods that just happen to be gluten-free. She’s also sensitive to special diets. Not updated very often now, but a nice archive to browse.

  • MY DARLING LEMON THYME. Besides the catchy name, Emma’s blog is well worth a visit for her lovely collection of gluten-free vegetarian recipes.

  • LOCAL MILK. Though not fully dedicated to healthy eating, Beth has created a beautiful slice of internet dedicated to slow living, including recipes that can be searched by ingredient or special diet. Lots of healthy meals are included.

  • DISHING UP THE DIRT. Andrea shares her beautiful farm-to-table lifestyle from her land in Oregon. You can filter recipes by season or type of veg.

  • SMITTEN KITCHEN. Deb shares a wide range of recipes here, but there are lots of gluten free, vegetarian and generally healthy options to be found if you don’t mind being tempted by chocolate cake along the way (anyway, we so all deserve a no-guilt treat once in a while, right?).

  • MY NEW ROOTS. Sarah is a holistic nutritionist sharing her favorite recipes that fall in line with her plant-based diet, accompanied by beautiful photography.

  • THE FOOD GAYS. Vancouver-based, Jeremy and Adrian create some lovely colorful dishes and, though not exclusively “healthy”, they definitely incorporate wholesome ingredients into the majority of their recipes.

  • DELICIOUSLY ELLA. Struggling with Postural Tachycardia Syndrome, Ella (who really needs no intro) experimented with food to help control her symptoms and has been on a mission to make vegetables cool ever since.

  • SPROUTED KITCHEN. Sarah is a wellness enthusiast and gets excited about food that comes in its purest form. Lots of wholesome family recipes to be found here.

  • SKINNY TASTE. Gina develops her recipes with a philosophy of eating seasonal, whole foods and maintaining good portion control (everything in moderation!).

  • ADVENTURES IN COOKING. Eva is an Oregon-based cook with a love of seasonal cooking and homegrown food and her photography is stunning too.

  • COOK REPUBLIC. Born and raised in India, Sneh now lives in the Sydney bushland and believes in cooking and sharing food that nourishes.

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COOKBOOKS

  • OTTOLENGHI SIMPLE. This is the latest release from world famous chef Ottolenghi, with 130 dishes that use his signature Middle Eastern–inspired flavors in a simple way. Most are healthy and there’s a big focus on vegetables.

  • GOOD GOOD FOOD. Sarah Raven’s 250 recipes “make you feel well, look well and live longer by using the most beneficial ingredients and without ever compromising on sheer deliciousness.”

  • DELICIOUSLY ELLA. There are many books from healthy eating guru Ella Woodward to try, but a good one to start with is “100+ Easy, Healthy, and Delicious Plant-Based, Gluten-Free Recipes.”

  • GO WITH YOUR GUT. This one is targeted specifically at people who have a sensitive gut, but nutritionist Robyn Youkilis has shared a great selection of 75 simple and healthy recipes that anyone would love.

  • EAT. NOURISH. GLOW. Nutritional therapist Amanda Freer battled health problems through her 20s. These recipes were developed from the lessons that she learned about the way food affected her body and symptoms.

  • HUGH’S THREE GOOD THINGS. This is simplicity at its best with Hugh Fearnley-Whittingstall’s 3-ingredient creations. There’s a lot of healthy recipes that are wholesome and uncomplicated to choose from here.

  • IT’S ALL GOOD. Another cookbook author who consistently focuses on nutritious ingredients, in particular those that will give us more energy, is Gwyneth Paltrow. There are several books to choose from, but this is a great place to start.

  • GOOD AND SIMPLE. This collection of “recipes to eat well and thrive” comes from the ever popular culinary twins Jasmine and Melissa Hemsley who are revolutionizing the way we eat. An excellent starting point with their growing collection.

  • IN THE MOOD FOR HEALTHY FOOD. Jo Pratt’s book is fantastic for everyday, easy, delicious meals that focus on healthy ingredients, where to find them and why they are so good which means we’re also learning along the way.

  • GORDON RAMSEY’S ULTIMATE FIT FOOD. “Recipes to fuel your life” is the tagline for this Michelin-starred superchef’s cookbook that’s geared toward athletes like himself. The focus includes general wellbeing, healthy weight loss and strength and energy.

  • READY, STEADY, GLOW. A collection of healthy recipes by Madeleine Shaw, this book acknowledges that life is often a balancing act and there’s a need for simplicity to encourage us to eat in a way that is most beneficial to our minds and bodies.

  • THE DOCTOR’S KITCHEN. This is UK doctor Dr Rupy Aujla’s first book. He aims to make healthy eating a pleasure, focusing on easy, inexpensive recipes that draw on his medical knowledge as well as his experience overhauling his own heart condition through food.

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OTHER

  • MAGAZINES. From Bon Appetit to Eating Well to Saveur, it’s worth browsing magazines for healthy recipes that appeal. Pass them along to friend when you finish with them or be sure to recycle. See their websites too because many share some recipes there too. It’s worth checking the websites of international magazines even if you don’t subscribe to their paper issues; BBC Good Food, Olive and Delicious are three for the list.

  • PINTEREST. Pinterest has a wealth of recipe ideas, many of them healthy options. If you’re not familiar that the source is a trusted one, check out the comments or do a bit of research before you start cooking. Many of the bloggers we listed above have healthy eating Pinterest boards you can follow. The platform is a great search engine, so you can look for specific ingredients you have available or names of recipes you have in mind already to find a good match. Check out our new Healthy Recipes Pinterest board!

Candyce Carragher
10 Minutes With: Julia Toronczak

Meet Julia Toronczak and her twin brother Michael, the voices behind the blog (and soon-to-launch jewelry business) Beyond the Waves. Their blog shares everyday stories of their lives and aims to educate us about Down Syndrome. Below, Julia talks about her work in microbiome research, which she has had an opportunity to tie in to the Down Syndrome community, and shares a bit about life with a twin who was born with Down Syndrome and the incredible impact Michael has on her life.

 
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MTEAM: Give us a little introduction to yourself, your twin brother Michael and Beyond the Waves.
JULIA TORONCZAK:
Hello! I’m Julia Toronczak, and my twin brother, Michael, was my inspiration for our blog, Beyond the Waves. It wasn’t until we were born that my parents found out that Michael had Down Syndrome. Although he is severely impacted by it and is nonverbal, he expresses love better than anyone else I know. I recently graduated from UC San Diego in General Biology, where I also competed on the ICA swim team for four years. Michael was one of the biggest reasons why I chose to stay close to home during college, and where his love for the ocean ignited.

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MTEAM: Tell us more about Michael and his personality! What does he love most? What makes him happy? What makes him uniquely Michael?
JT:
There’s nothing that Michael loves more than the ocean. He’s always so entranced by the repetitive motion of the waves hitting the shore. It started as a coping mechanism once I was attending UC San Diego. I lived on campus because of all of our practices, and Michael would come and visit every weekend. He would always be so upset when we would first meet up, but taking him to the ocean would immediately improve his mood.

He also loves going on walks around our neighborhood, and especially loves swimming! We’re both water babies, and whenever it’s really hot it’s always great to take Michael for a swim. I’ll usually place two noodles under his back, and he’ll kick and splash around.

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MTEAM: We love following your journey together on social media. Can you tell us more about how having Michael as a twin brother has influenced your life?
JT:
I couldn’t imagine my life without Michael in it. He’s tremendously impacted my perspective, and the importance of choosing to have a positive outlook on life. We all interpret the world around us in various ways, but we also have the power to control the way we take in everything. He’s reminded me to be grateful for what’s in my life, and to release any judgements around others. I love how Michael encompasses unconditional love -- he doesn’t care about race, gender, sexual orientation, religion, etc. All he cares about is how a person treats him, which reflects how he’ll treat them back.

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MTEAM: What’s a typical day in Michael’s life like?
JT:
Michael absolutely LOVES repetition. If you try and change up his routine, that’s a no-go for him. If he knows you’re in a rush, he’ll move even slower, regardless of how important it is to be on time. He can get dressed for the most part, but we still have to assist him if he gets stuck in a shirt. Although he can brush his own teeth, it’s incredibly important that they’re cleaned thoroughly, since he had open heart surgery as a baby. I recently got an electric toothbrush, so I’ve been brushing them for him so he can get adjusted to that. In a few more weeks, once he’s accustomed to it, then we’ll start teaching him how to use that by himself.

It’s incredibly important to let individuals with Down Syndrome live their own independent lives, and to assist when it’s necessary. If you see someone else who has special needs that you don’t know and think that they’re getting too much help, release those judgements. Oftentimes the family will know what that individual is capable of more than anyone else. As anyone else with Down Syndrome, Michael is incredibly stubborn, and if you try to get him to do something that he doesn’t want to do, then he will NOT do it. With Michael, it takes a lot more time to teach him how to do something than it might for another individual who has Down Syndrome, and that’s okay. We know what is best for him, and he continues to learn how to do things for himself at his own pace.

Now he’s in a day program, so he’ll wake up in the morning and have breakfast, my mom will drive him there, and he’ll spend the day going around the community or helping out with various tasks. My mom will pick him up in the afternoon, and whenever he’s at home he’ll always sit in the same spot on the couch. That’s the biggest thing I’m working on right now, since he’s so stubborn when he’s at home and refuses to get off the couch, except when he needs to eat, go to the bathroom, or go on walks. It’s really important to keep moving around during the day, and sitting can be really dangerous to your health without moving around every so often. On weekends, I’ll usually make him breakfast, and take him on an adventure somewhere-- usually the beach :)

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MTEAM: What have been some of your biggest challenges and the best rewards along your journey with Michael so far?
JT:
Growing up was really interesting, since Michael didn’t speak in words, and we didn’t play around with video games, or any board games like other kids did. It forced me to find other ways to interact with him, which included reading, playing outside, teaching Michael how to kick a soccer ball, etc.

I love how much Michael continues to educate me about life. Individuals who have Down Syndrome teach you incredible life lessons that you’ll learn no where else. I always say that no matter how many schools I attend, Michael will continue to teach me more about life. He continues to teach the importance of compassion, patience, love, gratitude, perspective, and so much more.

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MTEAM: In a recent newsletter, you wrote: “Even though Down Syndrome is the most commonly occurring chromosomal condition (about 1 in 700 babies) it's the least funded genetic condition in scientific research.” Tell us about the research you’re currently involved in and how it can potentially help people with Down Syndrome in the future.
JT:
Rather than “curing” Down Syndrome, I aspire to find a means of improved public health recommendations for these individuals that could stand to improve their quality of life. I’m really grateful for the opportunity I’ve been given to work in the Knight Lab in the Department of Pediatrics, in the School of Medicine at UC San Diego. It was co-founded by Drs. Rob Knight, Jack Gilbert and Jeff Leach; the project is actively run by the Knight Lab. Rob Knight’s lab is a leader in microbiome research, having held key roles in foundational projects such as the $173 million National Institutes of Health’s Human Microbiome Project. His lab develops both the software for analysis and the molecular protocols that enable microbiome research.

Little research has been done around the Down Syndrome population and the microbiome, so it would be really exciting to develop a baseline considering Down Syndrome has a lot of co-morbidity with heart defects, infections, celiac disease, and other diseases we already have microbiome information from. The American Gut Project, based out of our lab, is the world’s largest crowd-sourced microbiome research project, and the largest public human microbiome study to be published to date. We recently created a Down Syndrome cohort, which allows individuals with Down Syndrome to claim a free kit, thanks to the donations of others.

Beyond just the microbiome, Down Syndrome has a lot of research potential, and could give us some answers in cancer or alzheimer’s research as well. You can read up more information regarding this, and find out how to donate to our project here.

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MTEAM: One of your missions with Beyond the Waves is to educate. What would you tell parents who have just found out about a Down Syndrome diagnosis? What else would you most like people generally to know about Down Syndrome?
JT:
I’m not going to lie, it’s a really difficult journey. But I believe that the best paths in life tend to be the most difficult ones. They’re the ones that test our integrity and promote tremendous growth. I wouldn’t want to meet the person I’d be if I didn’t have a brother with Down Syndrome. As I said before, individuals who have Down Syndrome can teach you more about the beauty in life than anyone else.

Many individuals who have Down Syndrome can live independent lives, and are not a “hassle.” I am continuously inspired by these individuals and the light they offer to the world. That’s why it’s so important to continue raising awareness regarding Down Syndrome and special needs in general, since there’s such a negative stigma surrounding this population. The more we share our own beautiful stories, the more we can enlighten the perception of special needs.

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MTEAM: You’re about to launch a jewelry business to raise awareness about the beauty of Down Syndrome. Congrats! Tell us about the jewelry you’ll be selling and how you’re tying it all in with your goal to spread awareness of Down Syndrome.
JT:
I’ll be selling handmade jewelry made by myself that incorporates our blog, love of the ocean, or Down Syndrome. Some of the proceeds will be donated towards Down Syndrome research (still in the process of choosing an organization), to help raise awareness of how important the Down Syndrome community is in research.

Did you know that individuals who have Down Syndrome are protected from coronary artery disease, hypertension, and most solid tumors, including breast, colon, and skin cancers? Interestingly enough, scientists have discovered that individuals who have leukemia but do not have Down Syndrome end up having a part of the 21st chromosome amplified, which may carry a “leukemia oncogene.”

Just 30 years ago, the average life expectancy for an individual with Down Syndrome was around 25 years. Now, thanks to advances in research, that number has jumped up to about 60 years.

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MTEAM: What advice would you offer to anyone who has an opportunity to meet someone with Down Syndrome for the first time?
JT:
Just go ahead and introduce yourself! These individuals love getting to meet others, and interacting just like any one of us would. I always encourage others to go up and introduce yourself, and offer a handshake or a high five, even if the other individual can’t speak. I always love it when people introduce themselves to Michael, and you can tell that he loves it too :)

One of my previous posts gives additional advice regarding how to approach someone who has special needs, if you would like to find out more.

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MTEAM: If there was one thing you’d most like the world to know about Michael that you haven’t said here already, what would it be?
JT:
Michael is just like you or me. He feels the same emotions that any of us do, and can have great days and off days too. Because he’s nonverbal, he just needs to find other ways to express himself. I am continuously inspired by how blindly he loves others, which I believe is really important for our society today.

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Want to connect with Julia and Michael? Here’s where you can find them:

Beyond the Waves Blog
Instagram
Facebook
Twitter
Shop
Research Info
DS research cohort donations

Candyce Carragher