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Meet the MTeam: John Christian

Meet MTeam captain John Christian. This will be his fourth year in a row completing a century ride for the Best Buddies Challenge, a year to focus on growing the MTeam community and reaching the biggest fundraising goal yet - $250,000. 

Below, John talks about the evolution of the MTeam since he started it in 2016 and the importance of setting lofty goals, what it felt like to be one of the top individual fundraisers in 2018 and about the MTeam's biggest sponsor, CAPA The Global Education Network's involvement in the Best Buddies Jobs program.

MTeam Captain John Christian Interview.png

MTEAM: Let’s start at the beginning: Tell us the story of how you decided to get involved with Best Buddies and start the MTeam.
JOHN CHRISTIAN:
 A former CAPA The Global Education Network colleague, Greg Lewis, told me about Best Buddies. Greg and Laura’s daughter, Meredith, was born with FOXG1 Syndrome. It’s a rare neuro-developmental disorder caused by a mutation of the FOXG1 gene. It impacts brain development and function. It’s severe and difficult. Meredith suffers from seizures, is unable to control body movement, and she does not speak verbally. I say verbally because she definitely communicates in other ways. She has the most amazing smile. When she smiles at me I melt. Well, not just me; others have that experience too. She inspired me to start the MTeam, named after her, of course. I saw how difficult it can be to be a family and care for a child with an intellectual or developmental disability. I wanted to find a way to help and realized that I could set up a Best Buddies Challenge team in support of Meredith and FOXG1. 

So, in 2016, I asked my brother, sister-in-law and some good friends if they would participate in the Best Buddies Challenge in Hyannis Port, Massachusetts. They immediately agreed and six of us began fundraising. By the end of the Challenge, we had raised $11,500. Having never done anything like this before, we were pretty proud of our result which motivated us to immediately start building our team for the following year.

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MTEAM: Why is the MTeam and its mission so important to you?
JC: 
Giving back has always been important to me. I wouldn’t be where I am today if I didn’t get help along the way. Because others reached out to give me a boost, I want to do the same. I want to help people like the Lewis’. I got really excited when Greg told me about Best Buddies International and how they help people and families with IDD. I just knew this was the right path for me. Over the past three years, the MTeam has not only raised over $260,000 for Best Buddies but we’ve spread awareness about IDD and FOXG1 as well as how important inclusion is for everyone. Our MTeam community is built around awareness and inclusion.

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MTEAM: What’s the most rewarding part of your role as team leader? And the biggest challenge?
JC: 
The most rewarding part of being the MTeam captain is having the chance to meet families and friends who have children or friends with intellectual and developmental disabilities. Greg and Meredith both participate in the 5k run at the Best Buddies Challenge. She has a chair and they run together. Watching the love and inspiration around her is what makes this so rewarding. The challenge is building a genuine community with all the MTeam members. Last year, we had 54 people and we really tried to make sure everybody felt a part of our work in raising money for Best Buddies in a very personal and inclusive way. Next year, we hope to have 100 people and so the challenge will really be to make sure everyone understands why it’s so important to commit to this work to build our community year after year.

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MTEAM: What are your goals for the MTeam throughout the rest of 2018/early 2019?
JC: 
We have lofty goals but that’s who I am and what I do. Why go small? Go big! It’s so important to have goals. The MTeam’s 2019 goal is to increase the number of teammates to 100 and to raise $250,000 for Best Buddies. I believe wholeheartedly that we will reach this goal. We always do. I have to say, the goal is not just to raise money; while this is critical to real impact, we are also trying to raise awareness through storytelling and images of real people like you and me who just want to be a part of a community, who want a job, friendship, and inclusion. When I speak about the team and Best Buddies I always remind people that one of the tag lines for Best Buddies is, “I see you.” I love this because it's so important. When you see a person with an IDD, their family and friends on the street, just look up and smile. One smile can change a person's whole world. That's how important it is.

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MTEAM: What makes the MTeam special? What would inspire people to join you? 
JC:
 We have so much fun. Throughout the year, the MTeam holds events such as spinathons and our large spring gala. Helping people feels good. Words cannot describe the feelings when completing one of the Challenges, whichever one you choose. Kids and families from the Best Buddies programs are there and you see firsthand how much just showing up inspires and helps. I wish I could share those feelings with everyone. If I could, everyone would join! We are a team, we practice together, fundraise together. There is a camaraderie that has come out of the creation of this team and it’s not just the Challenge participants, it’s an entire community. Whether you follow us on Facebook, InstagramTwitter or YouTube, or are family and friends of Challenge participants, you are a part of this community. We receive all kinds of support, not just financial.  People donate their time to help train us, use their knowledge and skills to help us communicate better. I’ve met, and become friends with, so many amazing people that want to help. And the beautiful part is that this all stems from Meredith. So, you see, when you see someone with a “disability” (I don’t even know what that word means anymore), they have abilities that no one else has. They can change your life like no one else will. Humans shy away from different, but we should cherish and nurture it. It can be a gift. It’s all in your perspective.

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MTEAM: Mentally, what helps you reach the finish line and keep pushing yourself toward your goals?
JC:
We have so many goals and finish lines throughout the entire year and we just push to reach them all. We have a great team that works behind the scenes and we all are working towards the goals together. I have this innate sense for setting big goals and then inspiring people to reach them. I like coaching people in that sense. Having a goal that looks unattainable to others and watching us reach that goal is priceless.

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MTEAM: You were one of the top individual fundraisers for the Best Buddies Challenge in 2018. How did that feel? 
JC: 
It was an amazing feeling. I love a challenge and I’m very competitive, so a leader board like that is right up my alley. I can’t lie, it feels great. My personal fund was the third largest of the whole event. But it's not really about being at the top of the list, it's about knowing that when I reached out to my friends, family and professional community that they were in support of this amazing work that we do. Coming in number three was great, but what I really care about is that we raise enough money so that we can help over 200,000,000 people are desperate for love, life, community and purpose. 

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MTEAM: The MTeam’s lead sponsor is CAPA The Global Education Network, of which you are the CEO. Talk a bit about CAPA’s involvement with the Best Buddies Jobs program and what this means to you.
JC:
 Best Buddies is one of CAPA’s designated charities. That’s how important this is to us. Diversity and inclusion has always been an important personal value. At the base of it, CAPA’s mission is to give as many students as possible the opportunity to study abroad because we know that affects the world positively. That means, all students - those who believe they don’t have the money, students of all sexual orientations, students of all races and cultural backgrounds... No matter how a student identifies, at CAPA we want them to have this opportunity. We do what we can to ensure they can go abroad and have the most meaningful experience. Sending students to another country to live and study gives them opportunities to discover themselves and people who are not like them. This causes them to think differently about their world. They come home changed and that impacts those around them. At CAPA, we believe that this is how we make the world a better place. Best Buddies does something very similar. They give people with IDD the opportunity to learn about themselves and how to interact with people who are different than them. They aim to get people together to create friendships, community and employment opportunities. They spread awareness so that everyone has a seat at the table. The more we are around people who are different than us the more accustomed we become, the less afraid we are, the more connections we can make. This is how we make the world a better place.

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MTEAM: Share the MTeam memory that has been the most powerful and inspiring for you so far.
JC: 
That’s easy. It was the night we had our first fundraiser. Greg, Laura and Meredith along
with Greg’s family, came to the event and told the story of Meredith’s life. Greg and
Laura shared some very special and beautiful moments about raising Meredith. I watch
the group of about 50 or so people smile, cry and laugh with them. I felt so inspired. I saw the beginning of a real community and real love. I was hooked after that. I really
want to thank them for bringing us into their lives. It has changed many of us forever.

A Best Buddies Story: Dan "Dangerous Dan" Bivins

Dan Bivins, better known by his nickname "Dangerous Dan", is a familiar face to anyone who has been on the MTeam in the past. In fact, he's giving the intro to one of our videos from the 2018 Best Buddies Challenge.

Dan has taken on the important role of a Best Buddies Ambassador, advocating for an organization that has given him great support and friendship over the years. In his capacity as an ambassador, he has met celebrities and many other inspirational people, has sung the "Star-Spangled Banner" in Washington DC and has been an inspiration to many people himself along the way, us included.

Below, we take some time to get to know Dan a bit better, find out the meaning behind that nickname and hear all about his connection to the organization we run, ride and fundraise to support.

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MTEAM: Tell us a little bit about yourself!
DAN BIVINS:
 Hi, my name is Dan Bivins. I am from Massachusetts. I am a Best Buddies Ambassador for the State of Massachusetts. I am Director of Best Buddies for Stonehill College. I love to sing and make music videos. I'm doing a project working on a music video "Too Cool for School". Casey Desmond and Mary Desmond are helping me out with my song and music video. 

Dan 'Dangerous Dan' Bivins.JPG
Dan 'Dangerous Dan' Bivins.JPG

MTEAM: When and how did you become an ambassador for Best Buddies?
DB:
 I got an award at Milton High School to become a Best Buddies Ambassador.

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MTEAM: What are some of the coolest things you get to do as an ambassador for Best Buddies?
DB:
 I traveled to Miami, Florida and California. Rick Springfield asked some people to come up on stage at the Best Buddies Clambake for the Best Buddies Challenge in Washington, DC to sing the "Star-Spangled Banner."

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MTEAM: What do you love most about the Best Buddies? How have they helped to support you?
DB:
 Best buddies is amazing. I love it so much. It gives me a family. I love Best Buddies, all my family and friends supporting me. 

Dan 'Dangerous Dan' Bivins.JPG
Dan 'Dangerous Dan' Bivins.JPG

MTEAM: Do you have a favorite memory from the Best Buddies Challenge this past June?
DB:
Best Buddies Challenge is amazing! I love want I do. I worked hard. I have a lot of memories at Best Buddies Challenges doing rest stops and being host for Best Buddies Challenges.

Dan 'Dangerous Dan' Bivins.JPG
Dan 'Dangerous Dan' Bivins.JPG

MTEAM: How did you get the nickname Dangerous Dan? What does it mean to you? 
DB:
My nickname is Dangerous Dan. I made it up all by myself. It's positive and says just be yourself, be how you are, never change how you are, never give up, be yourself.

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MTEAM: Have you met anyone through Best Buddies who really inspires you? Who? 
DB: 
Anthony K Shriver inspires me.

Dan 'Dangerous Dan' Bivins.JPG
Dan 'Dangerous Dan' Bivins.JPG

MTEAM: You were featured in one of our recent videos - thank you! What would you say to someone who is thinking about joining the MTeam? 
DB:
Come on guys! Join the MTeam! It's amazing!

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MTEAM: Tell us about the short film you made with Sasha Pedro! Can we share the film with our readers? 
DB:
My friend Sasha did a project in school and asked me to make a documentary. I said yes, go for it!

MTEAM: What would you say to someone who was thinking about supporting Best Buddies but not sure?
DB:
Best Buddies is amazing. Be apart of it! It's fun!

10 Minutes With: Momma Fox Toys

Meet Alea Morren, entrepreneur who started Momma Fox Toys, inspired by her son Adlai who was born with a rare genetic condition called FOXG1 (follow their story on Instagram or Facebook). 50% of her profits are donated to support the International Fox G1 Foundation.  

Words and photos by Alea Morren

As the owner of a small business making handmade trendy items for children, I've always worked from a place of being inspired. My son, Adlai (AD-lay), was the spark that lit a fire in me, helping me find a channel for my creative energy. 

 Alea with Adlai

Alea with Adlai

I began making specialized sensory toys and bibs for Adlai in late 2014 when we were living in Montreal, Canada. He was around 3-years-old at the time. It corresponded to a time of improved sleep for me, since Adlai's medical condition was stabilizing. 

In 2015, we relocated to Pittsburgh PA, mainly for the weather (lol!), schools and services for Adlai. I set up shop in the basement and started making products for infants, toddlers, and older children (up to age 10). My main products are baby shower gifts (blankets, burp cloths, bibs), items to help toddlers look cool while simultaneously messy (bandanas), and items to engage imagination for older kids like chef sets/art aprons and tool belts. I also started making more items for mothers like bags, nursing scarves and nursing pads. But my special niche is items for special needs children/people, which include sensory toys, large/oversized bibs, tie bibs and wheelchair capes.

 Circular sensory toy

Circular sensory toy

I have always been interested in artistic projects. As a child I made up games creating color combinations and loved having coloring competitions with my friends. I was good at drawing and loved the attention it gave me, (attention deprived as 1 of 5 children). In school, my favorite part of book reports was creating the title page.  

After high school, I entered a special art school with studio courses in everything from sculpting and painting to ceramics and textiles, and subsequently went to University for Interdisciplinary Studies in Fine Art in Montreal. Suffice it to say, I've always had an artistic bent, and have always coped with stress through some form of it (journaling, painting, drawing).

 Baby shower gift set bundle

Baby shower gift set bundle

So why is Adlai my inspiration? Adlai is very unique. He was created with an extremely rare genetic mutation (about 300 people known to have it in the world), called Fox G1. Mainly, it affects the brain, and as a result, much else in the body is also affected--low muscle tone, digestive issues, immune issues, and vision problems. His brain is smaller than normal, and he has fewer neurons. His brain is simplified, with fewer folds than the typical brain. The front and back are less developed, and the hemispheres are very weakly connected. As a result, he has seizures, difficulty learning, remembering, and doing higher order things, like speaking, walking, and even sitting up without support.  

His early first couple of years were very hard, to put it mildly (living hell to be precise). His immunity was poor, and he would get sick easily and suffer greatly. He has severe reflux, and due to the pain from that, would scream daily from 1am-4am, without pause. He struggled to cope with the sensory input from his surroundings--loud noises, certain textures, etc. would set him off. Going grocery shopping or to the mall was no fun. No fun at all. When he started trying to eat solids, at 10 months, it would take three hours to feed him (after an Olympian effort), and by then it would be time to eat again. At 1-year-old, we received the diagnosis of FoxG1, and over that next year, we had about four terrifying ambulance rides to the ER until his seizures were under control.  

 Matching Momma shirt and baby leggings

Matching Momma shirt and baby leggings

Living through those years was very difficult and I also had his older sister, Arielle, to raise. I rarely slept and struggled with depression. But once some things got a little easier--for example, establishing some therapies, figuring out feeding strategies, finding resources around me (six hours of respite each week--yay!), I was able to apply what I was learning about sensory processing disorders and some neurology into improving Adlai's life. I started to make toys that had lots of ribbons and high contrast colors, with textures and colors he liked, since the toys in the stores were often too loud, hard, and bright. I needed toys that could strap down to his tray, to allow me to have time to make a meal or do a quick chore with him playing nearby.

Adlai was seriously the messiest eater I'd ever seen! I decided to try making bibs (large full ones) that would stand up to that mess. So my bibs are cotton on the front, to absorb liquid (otherwise it was in his lap), and waterproof underneath (cause they get soaked!), with adjustable snaps at the neck to last a long time.

 Baby shower gift set - Elephant March

Baby shower gift set - Elephant March

From there it was pure evolution. I'd have an idea, and try to make it. It was becoming my outlet. I started to feel a bit more normal. Eventually, I had baby showers coming up and started getting more creative. I went all out, making baby blankets and burp cloths. Then I started thinking about what I could make for my older daughter (then age 5) and made an art apron, oven mitts, and a cute chef hat. Then it was a carrier for her doll, worn like a Baby Bjorn carrier, and things have just continued from there. I have a 1-year-old now (soon to be 2) and so I started making teethers and baby hats and stuffed dolls, and now I'm really into baby leggings. I am continuously thinking of my kids and what they're into and use them to test my products. My oldest even consults on fabric choices and styles sometimes. In fact, my favorite thing to do while nursing my baby (and that is seriously hours in those early days), was designing products in my mind that would address some need or problem or have some unique feature. The kids would finally be down to sleep and I'd run downstairs at 9pm and sew until midnight! 

This last year, I've been working a bit less on new product design, and more on stocking for craft fairs like Handmade Arcade (such a good fair!). I sell in a local shop (So Me Jewelry and Gift Shop) and produce for custom orders.  

 Tool belt with zipper pocket and pouches

Tool belt with zipper pocket and pouches

With the birth of Anna in 2016, it's been a challenge to be productive and to have regular working hours (as any mother of young children knows), but I still find sewing to be a healing process for me. Having my own "work", separate from my children is vital. It allows me to reconnect with myself-the person I was before kids and before disability, to find my 'flow'. I work in a spirit of service and try to channel love as I work. 

I consider each piece I create to be a work of art, one that has come into the world through me, and often also through collaboration. I love to hear about who the piece will go to. If I'm making a baby shower gift set (my best seller), I like to find out about the mother, her style, her preferences, if there are siblings, things the family really likes, and get a sense of that family before I sit down to design. Then I'll confirm with the person ordering and proceed. I've had a couple people come back to me to report that their gift was the favorite of the shower! Hearing that makes all work and sacrifice worth it.  

 Alea with Anna in Momma Fox bib

Alea with Anna in Momma Fox bib

I'm looking forward to a time when I can dedicate a solid block of time each day to building up the business (producing more, getting into more stores, serving more people) to ultimately be able to donate more the International Fox G1 Foundation, which funds research and supports families of children with Fox G1. 

This Foundation was started by five mothers of children with Fox G1 in 2012, and at that time, was virtually the ONLY source of information on the condition back then (it was founded in the same month we got our diagnosis). Now, this incredible group supports families like mine with a toy sharing program, acquiring medical equipment and hosting conferences to network and share knowledge. They're working with groups like the Retts Foundation, and others who support knowledge about people with neurological disabilities. They are a force!

 Reversible waist apron with pockets

Reversible waist apron with pockets

So I am one of about 300 other Momma Foxes out there! I named my company Momma Fox Toys in Adlai's honor, understanding that every child has the need to play and learn to the fullest that their capacity will allow. Whether I'm making a custom toy or wheelchair cape, a baby blanket or nursing pads, what I'm trying to do is to use my gifts and talents to solve a need, to make life a little easier, to create more beauty in the world and to touch the hearts of everyone I interact with. That is certainly one of the many things Adlai has taught and shown me.

In fact, Adlai is one of my best teachers. Adlai cannot speak with his mouth, but he communicates love so clearly. He is simple but also pure. He is difficult at times, but never malicious. He will always be innocent. His smile lights up a room, and when he looks directly at you with those huge blue eyes, it's like the sun is shining on a cloudy day. He is so utterly beautiful and I know that he is how he is for me, for you, for the world to learn something. People like Adlai test us. They test our compassion, our humanity, our maturity and our character. The test is for me, as his parent, for his siblings, for his caretakers, and ultimately, for society at large.

 Sensory toys - gifts for Adlai's classmates one christmas - crinkles, bells, metal, wood, soft, smooth, snap, pull

Sensory toys - gifts for Adlai's classmates one christmas - crinkles, bells, metal, wood, soft, smooth, snap, pull

This past spring Adlai moved into a residence for people with special needs. They have 24/7 staffing and can meet Adlai's needs in a more sustainable way than we can at home. He is safe, and thriving. We are also less stressed and more capable of meeting the needs of our other kids and life is a little bit calmer (to say the least). I am so grateful that we can see Adlai regularly and can participate in special outings with him and the whole family. I'm at what a good friend referred to as, a "fertile void". I'm adjusting to my new reality, reassessing where I'm at with things, seeing how the girls are responding to this major change, and I'm looking forward to what comes. 

 

2019 Goals & 10 Reasons to Join the MTeam

The MTeam has grown significantly since we came together as a small community of riders for the Best Buddies Challenge in 2016. The numbers say it all. 

2016: 6 riders raised $13,000
2017: 30 riders and runners raised $100,000
2018: 50 riders and runners raised $150,000

2019: This year, we're aiming even higher with a goal of 100 riders and runners to raise $250,000. 

Will you join us? The MTeam welcomes everyone!

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10 Reasons to Join the MTeam: 

1. You'll help improve the lives of people with intellectual and developmental disabilities. Our fundraising efforts are in support of the incredible work done by Best Buddies International. They have three main functions that revolve around inclusion: to facilitate friendships, to help those who are able enough to find jobs and to offer leadership development opportunities. 

2. You'll have motivation to focus on your fitness. The big event we participate in every year is the Best Buddies Challenge. You'll have the option of cycling 20, 50 or 100 miles or running or walking a 5k. Whatever you decide, it will keep you on your toes as you train throughout the year for the big day.

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3. You'll see some amazing places along the way. Our training runs and rides often take us off the beaten path as we look for places to extend our routes. Some of us choose to pound the pavement of the city streets and others prefer to cycle out into the countryside hills or roll along the oceanfront for a breath of fresh air. Don't feel guilty about stopping for a breather and taking a shot of any beautiful views you come across on your way!

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4. You'll be inspired by Meredith's smiles and her story. The MTeam's formation was inspired by the smiles and story of Meredith Lewis, who rocks her role as our Chief Motivating Officer. Catch one of her contiguous smiles and you won't be able to help yourself but to smile as well. Mer was born with a genetic condition called FoxG1 and alongside raising money for Best Buddies, we're raising awareness for Mer and those on a similar journey as well. 

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5. You'll have opportunities to meet some some inspiring famous people. Best Buddies has the backing of a few pretty cool celebs who are often present at the Best Buddies Challenge and other fundraising events. Our team members have met Tom Brady, Justin Edelman, Guy Fieri and of course Best Buddies founder Anthony Shriver to name a few.

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6. You'll meet some incredible people who aren't famous too. Know who else you'll meet? Some of the Best Buddies themselves who often help out during the Challenge and other fundraising events. You'll hear them speak to the crowds, share their stories and talk about the impact that the support provided by Best Buddies along with the work we do makes a positive impact on their lives. And there's no doubt that those Buddies that we have met have left a positive impact on all of us too. 

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7. You'll be embraced as part of the MTeam family. From the moment you sign up to join us, you'll become part of a larger force and a fun community that is the MTeam. We have multiple smaller fundraising events throughout the year including a sequins and fedoras themed casino night in the Spring and of course come together for the Challenge. It's been said many times that it feels like we're all part of a big family, a caring group of individuals united around a common goal. You'll feel welcome from the beginning!

8. You'll raise awareness for people with intellectual and developmental disabilities. Beyond raising money, you will help spread awareness too. This might be through your fundraising efforts while you're explaining the work that Best Buddies is doing or simply because the stories you'll hear are often so powerful that you can't help but talk about them with others.   

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9. You'll learn a lot along the way. We've learned so much by being part of the MTeam. We've learned about our own physical and mental limitations and how we can begin to expand them. We've learned about the many ways that disability can impact a person's quality of life and how challenging the way society approaches disability by making a conscious effort to be more inclusive can make a real difference. We've learned about some of the rare conditions that can be present at birth. We've also learned that there's a long way to go to see real significant change in the world, but that every small effort toward it truly is worth it.

10. You'll be doing something positive and truly impactful. What we do as a team has changed the lives of many of us and many people with intellectual and developmental disabilities. Pushing ourselves by working hard to fundraise and train and then finishing a Challenge is truly exhilarating. Knowing that our efforts make a strong impact on the lives of real people, some of whom we've had the privilege to meet? There's nothing in the world quite like that feeling.  

Meet the MTeam: Greg, Laura & Meredith Lewis

Meredith Lewis, who just celebrated her big 10th birthday earlier this month (Happy birthday, Mer!), inspired our team captain John Christian to form the MTeam in 2016. Her parents, Greg and Laura Lewis took some time out to share her story and theirs, talk about the way the MTeam and Best Buddies have made an important impact on their lives and give us some of their personal insight into the rare genetic condition that Mer was born with - FOXG1.

 A family run!

A family run!

MTEAM: Your daughter Meredith was the inspiration for the MTeam’s formation and the “M” stands for her name! How did that all come about? 
GREG & LAURA LEWIS: We have run with Meredith for several years. We've done lots of races together including a marathon and half marathon. Running is a great family activity for us since it gets us outside, keeps us healthy, and Meredith really enjoys it. A few years ago, I (Greg) signed up for the Best Buddies Hyannis Port Challenge on my own, thinking it would be a fun race that supports a cause I care deeply about (supporting people with intellectual and developmental disabilities). I was honored when John Christian contacted me shortly after with an idea to form a team inspired by Meredith called the MTeam. Having worked for the MTeam's lead sponsor CAPA The Global Education Network for 10 years and having known John since then, I knew if anyone could make it work, he could. In 2016, our first year, there were 6 riders and we raised $13,000. We couldn't believe it! We had no idea at the time how much the team would grow. This year, we had 50 MTeamers and we raised $150,000! 

 Mer hanging out with her good friend Aidan.

Mer hanging out with her good friend Aidan.

MTEAM: Tell us a bit about Meredith. What does she love most? What makes her smile? What makes her uniquely Meredith? 
G&LL: Meredith is a love. She is an easy-going and adorable little girl. Everybody is equal to her - she's not afraid to fall asleep in front of a Kennedy or giggle loudly in church. When we hear extremely loud sounds that startle the rest of us, she busts out laughing. She loves flowers and knows when you are talking about her. She will shoot you side-eyes and look away as soon as you look over at her. She smiles when you talk about her friends or family, especially her friend, Aidan. She giggles when babies cry. She dislikes wind and is very dramatic when presented with 'the elements'. 

She has a sweet tooth and I love to bake for her. Her favorite meal is pancakes and currently, her favorite movies are LaLa Land and Dirty Dancing. She tells us she's thirsty by making a certain sound with her mouth. She tells us she's hungry by continuously putting her hand to her mouth. She tells us she's tired by rubbing her eyes. Her baseline demeanor is relaxed and smiley. Though rare, she cries when she's upset, tired, or in pain. She is very social and loves to be around conversation and people, music and activity. She sleeps in the exact same position every night: hands by her neck, elbows splayed wide to each side like chicken wings. We call these her "Do Not Disturb" arms; it means 'see you guys later, I'm going to bed'!

Meredith turned 10-years-old in June and while we never could have predicted this would be the direction life would take us, we absolutely cannot imagine our lives without her and we wouldn't change a thing. We believe Meredith came into our lives for a reason and the more we follow her lead and accept and enjoy what life has brought our way, the better things get.

 Mer's "Do not disturb" arms!

Mer's "Do not disturb" arms!

MTEAM: FOXG1, the condition that Meredith was born with, is extremely rare. For those who have never heard of it, can you explain a bit about what it is and how it manifests itself? 
G&LL: FOXG1 Syndrome is a rare neuro-developmental disorder caused by a mutation of the FOXG1 gene, which impacts brain development and function. When Meredith was diagnosed, it was explained to us that most of us have genetic mutations, but generally they don't manifest as anything. Since FOXG1 is critical for brain development, a mutation to this particular gene can cause severe complications. FOXG1 is characterized by seizures, inability to control body movements, and lack of speech. While the spectrum of abilities is quite broad depending on the exact genetic mutation, many kids with FOXG1 cannot walk or talk, and they struggle to communicate. Meredith presents on the severe end of the spectrum. It is possible for parents to be carriers, but most cases of FOXG1 are not hereditary and have no family history. There is no cure for FOXG1 Syndrome, but with medication, physical and speech therapy and nutritional support to help manage symptoms and prevent complications, a stable quality of life can usually be achieved. There are approximately 350 known cases worldwide. As there are so few adults diagnosed, we do not have a known life expectancy.

Meredith has seizures (they are somewhat controlled with medication), CVI (a vision impairment common in FOXG1), and she cannot walk or talk. She cannot use her body with purpose (no pointing or self-feeding). She has low muscle tone and wears a brace around her torso to help prevent scoliosis and ankle supports (AFO's) to school each day to provide support while standing in her stander. She recently had a G-tube (feeding tube) placed that we use primarily to administer medication and give extra hydration since drinking water is difficult for her. 

 The famous smile that gave Mer her official title as Chief Motivating Officer for the MTeam

The famous smile that gave Mer her official title as Chief Motivating Officer for the MTeam

MTEAM: Do you have any examples of how the MTeam has provided the severe and profound population with increased inclusion opportunities within the Best Buddies community? 
G&LL: This year marked the establishment of an official Water Carrier position at the Best Buddies and Tom Brady Football Challenge. This annual football game takes place the Friday before the race and has never had a formal way to integrate non-ambulatory participants into the game. This year, thanks to The MTeam, Mer and another one of her close friends who is also non-ambulatory, we were finally able to be active participants rather than sideline spectators, something we have been working toward for three years. This is a massive step for those with severe and profound challenges. An integration milestone that will live on for years. 

 Mer, rocking her Water Girl role for Best Buddies!

Mer, rocking her Water Girl role for Best Buddies!

MTEAM: How has your experience with the MTeam and Best Buddies been beneficial to Meredith specifically and your family as a whole?
G&LL: Things have evolved somewhat in recent years, but when we finally received a diagnosis of FOXG1 Syndrome in 2011 (Meredith was 3.5), we left the doctor's office with no information. There was no Specialist to go see, no information about what to expect, no support. A handful of us parents got together to form the International FoxG1 Foundation (foxg1.com) which has been able to provide family support since then. It is very unsettling to be the parents of a child with a disease that the medical community knows so little about. Teaming up with Best Buddies has increased awareness of FOXG1 and has provided countless opportunities for inclusion and friendship for Meredith. It's helped us feel part of a larger community and shown us that Meredith's diagnosis doesn't define her. We love showing Meredith that even though she is differently-abled, with the right support, she has many opportunities to experience all that life has to offer.

 Greg & Mer getting into prep mode the day before the Best Buddies Challenge.

Greg & Mer getting into prep mode the day before the Best Buddies Challenge.

MTEAM: What makes the MTeam special? What would you say to encourage others to join in?
G&LL: Being part of the MTeam has shown us how many people want to contribute to something greater than themselves. People want to give back, to make a difference, to be part of something that helps other people. We've been able to see and experience the energy and momentum that comes from a group of people all working together for a cause. Especially in a time where it's easy to get caught up in the negative through news, social media, etc. its been a beautiful thing to see just how much love and support is out there. Most of the runners and riders who have joined the MTeam return to take part again because of that energy.

 While Greg & Laura look on, team captain John Christian shows Mer some love mid-speech at the MTeam's spring gala sequins and fedoras casino night 

While Greg & Laura look on, team captain John Christian shows Mer some love mid-speech at the MTeam's spring gala sequins and fedoras casino night 

MTEAM: What have been some of your favorite, most supportive or most useful resources during your journey with Meredith that other parents who have children that were born with rare conditions may also find helpful? 
G&LL: We use social media (Facebook) to connect with other FoxG1 families around the world. With only 350 diagnosed globally, we are quite spread out. We have a FoxG1 Family Support Group where we can connect, share challenges and fears, ask questions, and learn from each other. We have had the opportunity to meet some of these families in person and it's incredible. We have a special bond since we share such a unique journey. We speak the same language. It feels wonderful to have conversations about equipment, seizures, meds, feeding tubes, and syringes, and have it feel completely comfortable. This is our normal and these people completely understand. It really helps us feel less alone. 

We also feel incredibly supported by the Personal Care Attendants (PCAs) we have hired to help us manage some of Meredith's daily needs. These PCAs have become family to us. Having help with some of the lifting, showering and feeding involved in Meredith's care make life feel do-able. We are extremely grateful for Mer's besties, Danielle and Sheila!!

 Mer loving the warmth of that fireplace and enjoying some smiles with Laura & Danielle

Mer loving the warmth of that fireplace and enjoying some smiles with Laura & Danielle

MTEAM: What’s one thing you’d like the world to know about Meredith or about FoxG1? 
G&LL: Meredith may present differently from other people, but we believe she is the way she is supposed to be. There is nothing "wrong" with her and nothing wrong with being different. She is perfectly imperfect. It is her differences that make her special and unique. The more we embrace that, the more she flourishes.

 Swing!

Swing!

MTEAM: Share an MTeam memory that has been the most powerful and inspiring for you.
G&LL: The first year of the MTeam, there were only 6 riders. We were celebrating at the clambake after the ride and all the buddies were called up on stage to take a photo with Tom Brady. We were struggling to get Mer's wheelchair through the crowd and we thought we were going to miss the opportunity. People began to notice us struggling and started to clear a path to help get up there in time. The crowd started chanting "ONE MORE!! ONE MORE!!" TB and the gang took notice of what was happening and they held off on taking that photo for a moment so we could join. We hoisted Mer up the stairs (not wheelchair accessible!!), planted ourselves smack dab in the middle and TB gave us a big thumbs up while everybody cheered for Mer. It was a perfect Best Buddies moment, everybody banding together to ensure everyone was included. No-buddy left behind :) 

You did good......

Thank you from the bottom of our hearts for your support. The MTeam's casino night was a huge success. We raised funds and spread awareness in order to help Best Buddies support people with intellectual and developmental disabilities and their families, like our Meredith and her family.  It is our hope that we all get used to the idea of lending a hand to people that are different than we are. Nobody is perfect at everything. We all need help at some point. Wouldn't we want someone to offer that help in a kind and understanding way? I'm sure none of us would like to be ignored or avoided. Nor would we want to be afraid to ask a question for fear someone would think us incapable. Lets try to put ourselves in someone else's shoes and think compassionately and empathetically. 

People with IDD's are living breathing humans with a mind that thinks the same thoughts and has the same feelings as the rest of humanity. Take the first step and smile at someone. So lets keep our good work going. Spread kindness and keep spreading it each day. Make that effort. Just one smile. 

Take a look at a few pics from the night.

Candyce Carragher