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Entrepreneur Stories: Catching Up With Collettey's Cookies

We interviewed Collette from Collettey’s Cookies last summer to talk about her business, how she’s helping and employing other people with disabilities and how she’s become a successful entrepreneur without letting Down Syndrome get in her way. She’s achieved way more since our chat last summer than many people do in a lifetime, so we thought we’d better catch up again! Read on and be inspired!

 
Interview with Collettey's Cookies.
 

MTEAM: What have you been up to with Collettey's Cookies since we spoke last summer?
COLLETTE:
I launched a new cookie (Oatmeal Raisin). I’m getting ready to launch another flavor next week (Peanut Butter). I have hired three people. I’ve started my 501c3 nonprofit educating and empowering programs. I have taught three entrepreneur classes. I’ve spoken (by skype) to Dubai, Slovakia, Philippines, Germany and New Zealand. I’ve spoken at four schools to students about empowerment and bullying. I did a commercial for Frito-lays potato chips (my smile will be on the bag July-Sept and I’m donating all money to Operation Smile). I did a short commercial on YouTube influencing abilities. I can't remember everything but that is what I can come up with.

Interview with Collettey's Cookies.jpg
Interview with Collettey's Cookies.jpg

MTEAM: We're excited about your "Ingredients for Success" workshop! What will it involve?
COLLETTE:
How to become an entrepreneur! I will talk about how I never thought about it, but had a hobby I loved so much that could make me money. Then I’ll talk about every step I took while getting started.

 
Interview with Collettey's Cookies.jpg
 
 
Interview with Collettey's Cookies.jpg
 

MTEAM: Why is running this important to you and for disability inclusion in employment generally?
COLLETTE:
It is so important to me. People are listening and interested in my story, so I feel I should use my story to help others and improve the lives of other people with disabilities struggling like I did. It is very hard and hurtful to have doors close in your face or not have the same opportunities as you brother or sister just because people don't give you them.

Interview with Collettey's Cookies.jpg
Interview with Collettey's Cookies.jpg

MTEAM: What's next for you this year?
COLLETTE:
Publish my first book (a series of five) for families and children ages 5-7. Write my 2nd book for ages 9-11. Then 12-15, 16-18, 19-23, to now. I am also working really hard to try to talk with Ben and Jerrys to make an ice cream with my cookies, lower the unemployment rate, grow my cookie company, teach more classes to help others, and finish raising money for my documentary to be shown in Washington DC which will ask for a tax incentive for companies that hire people with disabilities. And create more jobs for people!

 
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MTEAM: Share a bit about your experience showing Meredith and her family around Collettey's Cookies kitchen!
COLLETTE:
I just loved sharing my life and my company with her and seeing her so happy and smiling. It made me feel so good to know I can make someone else happy and to be a part of my team and my company. I just love her and her parents. It means so much to me to help others. 

Find Collette on her website, Facebook, Twitter, Instagram, LinkedIn and YouTube.

Will you help us make the world a more inclusive place for people with intellectual and developmental disabilities?

MTeam 2019 Jersey Reveal for the Best Buddies Challenge

It’s time for the MTeam’s Best Buddies Challenge 2019 jersey reveal!

We’ve been so excited to share the story behind a very special design this year.

 
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You may remember that we donated a piece of technology called the Tobii PCEye Plus to the Bi-County Collaborative (BICO) program at King Phillip Middle in Norfolk, MA, where Meredith attends school. Meredith is the “M” in our MTeam, the heart of what we do and our Chief Motivating Officer.

Like 10-year-old Mer who is non-verbal, other students who attend the school have disabilities that make traditional modes of communication impossible. Eye movements are often the only movements that individuals with severe and profound disabilities can control voluntarily. 

“Everybody deserves to be heard, and this revolutionary technology will provide a silent population the ability to communicate,” Mer’s dad Greg Lewis said.  

Watch the video from launch day here:

 
 

This system truly is giving many of the students there the chance to communicate effectively for the first time ever, Mer included. It is innovative technology and the world’s first device that combines advanced eye tracking, switch and infrared control with speech recognition.

What does that mean practically? 

“It is apparent connections are being made and pathways are developing,” Greg said. “Meredith’s vision and focus is so much better too. She actually greets us with her eyes when we see her. It's consistent.”

Mer is now able to ask for a glass of water when she is thirsty. 

She has been able make other requests at school as well, recently asking to watch a cooking show. “This was especially notable because she had a major appetite that day,” Greg said.

And…she was able to use her eye movements to express her creativity and to paint the picture below:

 
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We’re so thrilled for her as she continues to open new doors, gain confidence and hone her abilities. MTeam captain John Christian had an incredible idea for our jersey design this year: Mer’s wonderful artwork curves around the bottom half, vibrant proof of this newly life-changing ability to express her imagination freely. 

This is our jersey design for 2019:

 
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Note: This is our artwork mock-up, but stay tuned for more images when the actual jerseys arrive!

By incorporating Mer’s painting into our gear, we are celebrating her many accomplishments since we began the MTeam. We’re proud of how far she has come! Mer was born with FOXG1 Syndrome, a rare neuro-developmental disorder that impacts brain development and function. Those colors and patterns in her artwork are hers alone, and something she has never been able to share before. We hope that when others see the painting, it will spark curiosity and we’ll be able to talk with them about Mer’s story and why we do what we do. 

John started the MTeam with just six people, to help make this world a more inclusive place for Mer and others with intellectual and developmental disabilities around the world. It has grown to nearly 60 members in just a few years. 

This year we’re aiming to raise $250,000 for Best Buddies International. We need your help. We are still short of our goal by quite a lot. Your generous donations will allow us make a real impact. Please consider contributing to the amazing work this team is doing (donation link below). We appreciate it and there’s a huge community out there who will as well! 

Mer’s dad Greg who is, of course, one of the original MTeamers, said, “The MTeam, BICO and Best Buddies are truly changing lives. We are so fortunate to be surrounded by such love and support. Over the course of this academic year, Meredith has made dramatic advancements in visual processing and communication. It has been a joy to watch our daughter develop so consistently and we look forward to her continued growth.”

Please support our work with a donation if you can,
and help us share this post and news with your networks too:

Top Training Tips for the Best Buddies Challenge

It’s crunch time for Best Buddies Challenge training! 

Whether you’re running the 5k or taking on the 100 mile bike ride of a lifetime, there’s just a few weeks left to prepare yourself the best you can. 

 
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Below, we’ll share a few of our best tips:

1.) KNOW YOUR EQUIPMENT. You should have enough experience using your gear before the big day to have confidence that everything is well-fitted and comfortable: your bike, sneakers, any protective gear and the clothing you’ll wear for the ride or run. Try our sponsors Apex Velo for advice on gear and a professional bike fitting. 

 
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2.) RIDE, RIDE, RIDE / RUN, RUN, RUN. There’s no substitute for putting your feet to the pedals or sidewalk and practicing as much as possible. Make sure you’re using these last three weeks to push yourself to your goal so you know you’ll achieve the cycling mileage or full 5k on the day. Get out there as much as possible. No excuses! If you live close enough to work, make your commute to and/or from the office (depending on facilities available) part of your training routine. 

 
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3.) SET ATTAINABLE GOALS. If you’ve rarely cycled more than 10 miles and haven’t had the time to train as much as you know you would have needed, don’t try to tackle 100 miles. Set yourself smaller goals that you know are just beyond what you’d normally run or cycle, but within reach so you don’t become frustrated or disheartened. When you meet new milestones in distance, speed or duration, you’ll be encouraged to set them slightly higher the next time. 

 
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4.) RUN OR RIDE WITH SOMEONE MORE EXPERIENCED. Pair up with another MTeamer, friend or coach to run or ride alongside you when you train. When you give someone more experienced the lead, you’ll gain competence and confidence. That person can also pass along their own insight and valuable advice. And there’s safety in numbers. (Our private MTeam Facebook group is a great place to connect with other runners and riders - have you joined?)

 
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5.) USE A FITNESS APP OR ACCESSORY. Try Garmin, WahooWe or MapMyRide as motivation to keep going. And our favorite, STRAVA (Find the MTeam club here). There are many other options out there too, so do some research and decide what would work best for you. 

 
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6.) MIX UP YOUR ROUTE. If you run or ride the same route every day, it’s hard to stay focused and interested. We all have smart phones with maps these days, so it’s hard to get lost, and Strava and other apps can show you some of the popular routes in your local area. 

 
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7.) NOTE THE WEATHER AND TIME. Depending on the season, Mother Nature can throw some roadblocks into your training plans. If it’s a hot summer day, consider taking to the road as the sun is rising or just before it sets when the weather is cooler. In the winter, make sure the roads are safe and not slippery. Wear layers. Or simply take it to the gym to avoid taking unnecessary chances. 

 
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8.) BUILD IN REST DAYS. As important as it is to be on the move, make sure you’re also giving your body plenty of time to rest and recuperate in between intense training days. It will help you avoid injury and give yourself a much needed mental break as well so you don’t burn out. 

 
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9.) REMEMBER YOUR “WHY”. When you’re training or participating in the Best Buddies Challenge on the day and your energy is starting to flag, take a minute to remember why you’re doing what you’re doing. That physical exertion is often boosted by a mental bust of motivation. Have a cycling/running buddy to remind you and, if possible, friends or family waiting at the finish line or along the route to cheer you on. 

 
Top 10 Training Tips for the Best Buddies Challenge
 

10.) STAY HYDRATED AND NOURISHED ALONG THE WAY. Your muscles need fuel to work their best and nutrition and water are crucial, especially when you’re challenging yourself with one of the longer rides. It’s best to eat and drink before overwhelming hunger or thirst hits. If you’re cycling 100 miles, there will be five rest stops along the course. 

 
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And don’t forget to have fun! There’s a carnival like atmosphere on the day of the event and there’s power in numbers, so you’ll likely feel pretty pumped up to tackle whatever challenge you set for yourself. Meet the Buddies, relax with a message, enjoy the lobster and dance the night away celebrating everything our hard work will have achieved. 

Meet the MTeam: Catherine Colon

Meet Catherine Colon, another one of our team members who travels all the way from her home in London to participate in the Best Buddies Challenge with us each year. She also comes to Boston to take on the important role of Blackjack dealer for our annual casino night fundraising gala.

Below, Catherine talks about her past experiences at the Best Buddies Challenge, shares the story of how she “beat” an Olympic gold medalist in the 2017 5k run and recaps a favorite memory from her time with the MTeam so far.

 
Meet the MTeam - Catherine Colon.png
 

MTEAM: When and why did you decide to join the MTeam?
CATHERINE COLON:
I joined in 2017, inspired by the MTeam after they completed their first year; they were doing so much good and I wanted to be part of it!

 
Meet the MTeam - Catherine Colon
 

MTEAM:Why is the MTeam and the Best Buddies mission important to you?
CC:
The MTeam is particularly inspirational due to Meredith, our Chief Motivating Officer – her smile will motivate a snail to run fast! The overall mission of Best Buddies is also so important in working to end to isolation for those with IDD.

Meet the MTeam - Catherine Colon.jpg

MTEAM: What’s one thing you’ve learned from being part of the MTeam community?
CC:
It feels amazing to give back.  What’s also great about the Best Buddies Challenge, our main event, is that you can see in the smiles of the Buddies how much what you are doing makes a difference.

Meet the MTeam - Catherine Colon.jpg

MTEAM: What makes the MTeam special? What would inspire people to join you?
CC:
It is probably the most fun team around! We throw a great after party and nothing tops our casino nights!

 
Meet the MTeam - Catherine Colon.jpg
 

MTEAM: Did you walk, run or ride in the 2018 Best Buddies Challenge? What about 2019? Describe the atmosphere of the event for us!
CC:
I run the 5K. It was particularly fun the first year when I ran against (and beat) 9x Olympic gold medallist Carl Lewis (okay, he was walking with the Buddies, but check the times…)! The weather is almost always nice that time of year and everyone is so happy and upbeat. There is almost a carnival atmosphere. 

Meet the MTeam - Catherine Colon.jpg

MTEAM: Tell us about your training regime and how you prepare yourself for the physical challenge.
CC:
I love to work out everyday, but don’t specifically train for the event. I mix up my days with running, using my rowing machine, and YouTube videos for HIIT and barre workouts. I need to work on more stretching….

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MTEAM: Mentally, what helps you reach the finish line and keep pushing yourself toward your goals?
CC:
I like to move fast in all parts of life! 

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MTEAM: How did you feel when you crossed the finish line last year?
CC:
Fantastic! It is always wonderful when you’re done and the serotonin is flowing. I like to dance near the finish line waiting for everyone one else to come in! 

Meet the MTeam - Catherine Colon.jpg

MTEAM: What’s your best piece of advice for MTeam newbies and one piece of advice for returning MTeamers?
CC:
It’s probably a good idea to do some training (a lot of training if you are doing the 100 mile bike ride!) and get a good night’s sleep. 

Meet the MTeam - Catherine Colon.jpg

MTEAM: Share an MTeam memory that has been the most powerful and inspiring for you so far.
CC:
I loved Rick Springfield performing last year at the clam bake after the run. When he brought Buddies up on the stage and they were dancing and singing with him with such joy, it was just a perfect way to celebrate!

Meet the MTeam - Catherine Colon.png

Help us make an impact for the community of 200 million people around the world with intellectual and developmental disabilities.

MTeam Fundraising: Where Does the Money Go?

We’re set ourselves a very lofty fundraising goal for the Best Buddies Challenge this year: $250,000.

The funds support the mission of Best Buddies International, which is “the world’s largest non-profit organization dedicated to ending the social, physical and economic isolation of the 200 million people with intellectual and developmental disabilities (IDD).”  

But what does that mean in practice? What is that money actually used for? And how much of it goes directly toward helping the community Best Buddies serves?

Let’s take a closer look…

Where the Money Goes: A Breakdown

Charity Navigator scores Best Buddies highly when it comes to financial transparency and accountability, saying, “Best Buddies International outperforms the majority of nonprofits in America with respect to fiscal responsibility”.

In fact, 83% of the money they raise goes directly into their programs and services. Just 5% goes to administrative expenses and the remaining 12% covers fundraising expenses.

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Where the Money Goes: Programs

The community Best Buddies serves includes, but is not limited to, people with Down Syndrome, Autism, Fragile X, Williams Syndrome, Cerebral Palsy, traumatic brain injury and other undiagnosed disabilities.

There are four main pillars in the organization’s work. Each tackles a different area where the IDD community struggles with inclusion:

  1. ONE TO ONE FRIENDSHIPS. People with IDD can often feel excluded or isolated, even if they are attending ordinary schools or living a relatively “normal” day-to-day life. This program aims to shift that culture. It starts as early as middle school where kids with IDD and kids without are matched up as buddies. The friendships that blossom help with self-confidence and self-esteem. The meaningful connections that are created are often life-long and, like any friends, the pair share their interests, experiences and activities. There are programs for high school and college students as well as adults and they’ve even launched an e-buddies program for online friendships.

  2. INTEGRATED EMPLOYMENT. Diversity in the workplace is so important. Individuals with IDD are very often more than qualified to work and have abilities that can be incredibly beneficial to an organization that hires them. Unfortunately, 81% of adults with developmental disabilities do not have a paid job in the community. Best Buddies knows this, and their jobs program helps to bridge the gap. They match individuals who are both skilled and qualified with businesses who are looking for employees who will be enthusiastic and dedicated to their work. They create partnerships with employers, assist with the hiring process and provide ongoing support to both parties. This gives people with IDD an opportunity to earn an income, pay taxes and independently support themselves.

  3. LEADERSHIP DEVELOPMENT. Best Buddies helps people with IDD build their confidence, self-esteem and important career skills through leadership coaching. Their ambassadors are given both group and private training as well as practice with speech writing and public and conversational speaking. They are taught how to advocate for themselves, their peers and Best Buddies in their communities, workplaces and government. There’s also a promoters program which empowers young people to become advocates for people with IDD, to open new Best Buddies Chapters in schools and organize special inclusive events that promote awareness of the disability rights movement.

  4. INCLUSIVE LIVING. This is the newest pillar in Best Buddies’ work, which supports community, independence, and skills development. It encourages people with and without IDD to live together in vibrant communities that focus on supporting all of the residents in accomplishing their life goals. It gives people with IDD the opportunity to live in a dynamic environment where they can learn, grow and thrive. Residents will share meals, participate in cultural events and holiday parties together and have access to fitness classes, sports and social activities. It encourages independence, friendships and opportunities for personal growth. The Best Buddies Living Residence is based in Los Angeles, CA and will be opening soon for residents.

 
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Meet some Best Buddies Ambassadors

We’ve really enjoyed connecting with some of the Best Buddies Ambassadors in past Q&As on our blog. If you missed them and would like to read some firsthand experiences people have had with Best Buddies, take a minute to meet:

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Where the Money Goes: MTeam Initiatives

While our fundraising efforts for the Best Buddies Challenge go exclusively to Best Buddies International, The MTeam is also committed to supporting a very special member of the IDD community. Meredith Lewis is the “M” in MTeam and our Chief Motivating Officer for the Best Buddies Challenge.

Meredith was born with a rare neuro-developmental disorder called FOXG1 Syndrome, characterized by seizures, inability to control body movements, lack of speech and visual impairments. Meredith cannot walk or talk and is unable to use her body with purpose.

Recently, The MTeam was able to go beyond our fundraising efforts for Best Buddies. We spent $5,000 on a piece of technology for Meredith’s school that would revolutionize the way her and her classmates are able to communicate. The technology she now has access to, and is learning to use every day, is called a Tobii Dynavox PCEye Plus. This piece of assistive technology allows Meredith to use her eye movements to select words or images on a screen. This is life-changing.

 
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Will you help us reach our fundraising goal of $250,000 for Best Buddies International, to make a strong impact on inclusion for the IDD community this year?

Candyce CarragherComment
10 Minutes with: Angie Wingerden

Meet Angie, mom to Eila and twin brothers Jack and Willem. Inspired to contribute her skills toward creating a better life for Eila who was born with a rare genetic condition called FOXG1, Angie volunteers as the CFO and Head of Operations for the FOXG1 Research Foundation.

Below, Angie tells us more about her work with the Foundation, shares a few stories of life with Elia and talks about what it’s like - both the challenges and the rewards - to be a mom to a child with special needs.

 
Angie Wingerden Q and A - FOXG1
 

MTEAM: Tell us a bit about yourself and your family.
ANGIE WINGERDEN:
Hi, I am Angie, mom to Eila who is 15-years -old and has FOXG1 syndrome.  We live just outside Ottawa, Ontario, in Canada. Eila has twin brothers - Jack and Willem who are turning 11, and dad Jeremy, along with our dog Fergus and some chickens. We spend a lot of time living outdoors enjoying nature and our country setting.

Angie Wingerden Q and A - FOXG1
Angie Wingerden Q and A - FOXG1

MTEAM: You’re the CFO and Head of Operations for the FOXG1 Research Foundation. What led you to become involved in this organization and why is it important to you? 
AW:
Yes, I am the CFO for FOXG1 Research Foundation, a new role to me just last fall. It came about when I volunteered my time to help them plan the Science Symposium in San Diego last November. See, I am an event planner by day and I believe in sharing my skillset to give back to our FOXG1 community. No one is as passionate as a parent with a child afflicted with this syndrome, and it makes me feel good to be doing my part to help our kids. I had watched closely the impact this new foundation was having globally to fundraise and then fund research and being a passionate mom to a child with FOXG1 syndrome, I knew there was an opportunity to help.  When they asked me after the symposium to join the board, it just made sense to continue my efforts to help any way I could.

Angie Wingerden Q and A - FOXG1
Angie Wingerden Q and A - FOXG1

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? 
AW:
No parent is ever prepared for a non-typical baby experience. Especially as a first time parent, you are learning so much as it is, as it is all new to you. You blissfully think it will be just like you see all around you, snuggles, dirty diapers, burping, play, sitting, walking, talking. Then to have a baby that cries in an inconsolable way for days on end, and to watch that baby not learn typical skills like sitting up, reaching and grabbing to play with objects, or even smiling and laughing is very hard. To spend 11 years watching them never typically develop and be poked to have blood, skin, and muscle samples taken to try to find the answer? We were grateful to have found our answer, even if it took 11 years, because now we are part of this community who share similar stories of challenges and tips to support each other! Because this is a neurological syndrome, it effects Eila's entire body system. She is non-mobile, using a wheelchair to get around; she is non verbal, we have never heard the words “I love you”; she has sleep disturbances, feeding difficulties, lots of GI issues, eye sight issues, anything that requires a message from the brain to muscle movement is difficult. I have grieved. I have celebrated. We have made big compromises in how and where we raise our family to make caring for our daughter a lifetime commitment. It is not the mom life I would have expected, but it really is rewarding and I can't imagine it any differently.

Angie Wingerden Q and A - FOXG1
Angie Wingerden Q and A - FOXG1

MTEAM: What is a typical day at the FOXG1 Research Foundation like for you?
AW:
Each of our roles at the foundation are volunteer, which means I balance full time work and parent life along with the duties of the foundation. It can be tricky, but luckily it can be fit in any day or time of the day as needed. I maintain bookkeeping records for the foundation, provide monthly financial reports for each board meeting, work with an accountant to produce year end financial statements and the annual report. I also assist with fundraising efforts, donor relationships and communication and assist our Canadian families with completing the patient registry.

Angie Wingerden Q and A - FOXG1
Angie Wingerden Q and A - FOXG1

MTEAM: Tell us a bit more about Eila and her personality! (How old is she? What does she love most? What makes her happy? What makes her uniquely Eila??)
AW:
Eila is a happy-go-lucky girl; similar to the other stories you have shared, her smile and laughter can fill a room! She has a magnetic personality that others are drawn to. She is a social butterfly and loves school. She loves to use her walking frame to travel through the halls and cafeteria and seems to especially like visiting the weight room to watch the boys and listen to their tunes blaring. Typical teen :) She loves music, all kinds.  She loves books and movies, and a good joke!

Angie Wingerden Q and A - FOXG1
Angie Wingerden Q and A - FOXG1

MTEAM: What’s one thing you’re proud of having accomplished through the FOXG1 Research Foundation so far? 
AW:
I'm proud to have been welcomed so warmly into this group of dedicated, powerful, resilient women, to be part of a small team leading great things happening globally for the future of our kids. It's an exciting place to be right now. Things are happening so fast for the better of our kids.

Angie Wingerden Q and A - FOXG1
Angie Wingerden Q and A - FOXG1

MTEAM: What have been some of your biggest challenges and the best rewards along your journey with FOXG1 so far (ether with Eila or through your work)? 
AW:
Biggest challenges have been watching my child in distress and not knowing how to help her. It is painful to not be able to understand without words what is going on in her body that can cause such discomfort and try to solve it. Every day is a reward with Eila. I have watched her brothers growing into compassionate young boys with such big hearts. I have been privileged to employ and work alongside some amazing people in our community, who dedicate their life to working with children with special needs. I have seen the community rally and support us with awareness events and fundraisers when it came to needing equipment and other items. It really does take a village, and I am thankful for ours.

Angie Wingerden Q and A - FOXG1
Angie Wingerden Q and A - FOXG1

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? 
AW:
I would want other parents to know we have all lived it or are living it. The family group on Facebook is a great resource to ask questions and look for support. Our foundation has initiated a caregiver committee and a special fund to assist caregivers in need.  We have already sent caregiving packages to parents in hospital with their sick child, and started a resource file for families looking for therapy, camps, support groups, other resources in their areas. They are working on lots of great ideas for the future to lessen the burden, help caregivers, and know they are supported by our community.

Angie Wingerden Q and A - FOXG1
Angie Wingerden Q and A - FOXG1

MTEAM: What are some of the key changes that would make the world a more inclusive place for children born with FOXG1? 
AW:
Access to consistent, available therapy, assisted devices and equipment. These things are all very expensive. For the average family, to be able to provide them to watch their child succeed is impossible!

Angie Wingerden Q and A - FOXG1
Angie Wingerden Q and A - FOXG1

MTEAM: If there was one thing you’d most like the world to know or understand about Eila or about FOXG1 generally, what would it be? 
AW:
Eila and children like her are trapped in a body that can't express themselves the way they would like. To remember that is key; treat them with dignity and respect, always assume competency. Like every human, they want friendship, someone to listen and love them back.

Candyce CarragherComment
25 Best Fundraising Tips for MTeamers
 
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With just over a month and a half before the Best Buddies Challenge, it is crunch time for those of us racing to meet our fundraising commitments. Whether you’ve been chipping away at your goal for almost a year now, you’ve just joined recently or you’ve been procrastinating (easy to do, we know), here are some tips to help you make the most of the remaining weeks.

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1.) START NOW. Starting your fundraising efforts as early as possible is one of the top pieces of advice from large charities

2.) LOSE YOUR INHIBITIONS ABOUT ASKING FOR MONEY. Re-frame your thinking about fundraising and you’ll find it easier to reach out and ask for money. It’s a selfless act that will benefit other people. It’s great to feel proud of what you’d doing; others will notice and feel proud to support the cause too.

3.) KNOW YOUR CAUSE. Take a few minutes to read the “About the Cause” page on the Best Buddies website and learn as much as you can before you start fundraising. Same goes for the MTeam, and the connection between the two.

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4.) MAKE A LIST. Spend a few minutes brainstorming a list of everyone you can think of who might be willing to donate. Write them down. Work through your list with personal messages or, if possible, ask in person. Make notes. If you have a positive response, don’t forget to follow up if you don’t hear from them in a few days or a week later.

5.) ASK AND ASK AGAIN. One ask for donations is easy to ignore, especially on social media. Ask again and again. Social media posts don’t reach all of your followers. One ask by email or text or in person can be forgotten. Repeat and, if you have a positive response, follow up again if needed.

6.) ASK IN PERSON. People are far more likely to donate when you ask in person and share your story. Follow up with a text or email that has your fundraising link.

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7.) SEND EMAILS. You probably have a bigger contact list than you realize. Look through your address book and send personal, individual emails to anyone you think may consider supporting your campaign.

8.) MAKE IT PERSONAL. Know your “why” and your connection to your fundraising efforts. Perhaps you know Meredith or you have a child or another connection who could benefit from the work of Best buddies. Share this story when you’re asking for donations.

9.) LINK TO YOUR FUNDRAISING PAGE EVERYWHERE. From social media profiles to your email signature to your Whatsapp profile, there are plenty of places it’s possible to share a link. Don’t miss out on the opportunity.

1.) Start now. 2.) Lose your inhibitions about asking for money. 3.) Know your cause..png

10.) “THERMOMETIZE” YOUR PROGRESS. Keep your network up to date on where you are in the fundraising process with a thermometer visual. Tell them how close you are to reaching your goal and how much help you still need from them. Canva or a screenshot of your fundraising page work well for this.

11.) CONSIDER PAYDAY. Whether most people you know are paid weekly, bi-weekly or monthly, keep this in mind when you’re asking for donations. When it’s the end of a pay period, everyone is a bit more conscious about spending money, whereas if you catch them in the first few days after payday, they’ll be more comfortable giving to your cause.

12.) RECRUIT YOUR FRIENDS. Sign up a friend and you’ll both receive $100 in your campaign through our referral program. Plus, you’ll have a runner/rider buddy that you already know and can offer each other moral support as you continue fundraising.

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13.) TALK ABOUT THE MTEAM. When you’re out and about with friends or meeting new people, talk about what you’re doing and why you got involved. You may find someone interested in making a donation. If you find someone who loves to run or cycle and may want to join the team, that’s worth a $100 donation through our referral program.

14.) EXPAND YOUR NETWORK. Ask connection and donors if they know anyone who would be interested in supporting Best Buddies. They may have a personal connection to someone with a disability and be particularly inclined to donate for disability inclusion.

15.) SHARE OUR CONTENT. Follow the MTeam on social media and, if and when our social media or blog content resonates with you, share it with your own network, along with your own comments. This may be on your Facebook page or in your Instagram stories or wherever you hang out most. Find us on Facebook, Instagram, LinkedIn, Pinterest, Twitter and YouTube. Check out our blog too.

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16.) USE VIDEO AND STORIES. If you’re asking for donations on social media, consider making a short video. A face and voice can add a new dimension to your request for donations and videos are easier to ignore. Stories show up at the top of the news feed and you can keep coming back as they disappear 24 hours later.

17.) LEAVE DONATION BOXES. It’s well worth asking around at your local cafes, shops, religious organizations or other places that have a high amount of foot traffic to see if you can leave a donation box, decorated to tell the MTeam story.

18.) CHECK FOR MATCHING FUNDS PROGRAMS. Many employers offer matching funds programs to their employees, and Best Buddies accepts these, so check in with the people who have made a donation and see if their company has something like this that can double their impact.

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19.) ORGANIZE A BAKE SALE. If you have kids at a school or belong to a religious organization or can get your employer on board, see if you can gather fellow parents/worshippers/co-workers together to host a bake sale where the profits go into your fundraising campaign.

20.) HOST AN EVENT. Whether it’s a dinner, a movie night, a kids play date or a party, put in some extra effort and charge a small amount of “admission”, explaining to your guests that you’re hosting the event to raise a bit of money for your fundraising campaign. They will most likely be happy to go along with this.

21.) SET UP YOUR FACEBOOK BIRTHDAY CHARITY. If you’re lucky enough to have a birthday coming up, Facebook allows you to “donate” your birthday to a cause. Set it up as a personal cause rather than selecting Best Buddies so that you can manually transfer the funds to your own fundraising campaign rather than them going directly to Best Buddies.

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22.) SUGGEST A GIVING EXCHANGE. If consumerism gets you down over the holiday season, suggest exchanging donations with a friend instead of physical presents this year. You could do the same for your birthday.

23.) SEND HANDWRITTEN NOTES. In a time where virtual communication rules and clutter is everywhere, a handwritten note may be just what is needed to stand out, whether you’re asking for donations or saying thank you. Use a short and memorable bit.ly link that can easily be typed into a browser.

24.) CLEAR YOUR CLUTTER & DONATE IN YOUR OWN NAME. While ideally your donations will come from others, there’s nothing wrong with taking advantage of spring cleaning and either hosting a yard sale or popping a bunch of listings up on eBay. Donate the profits to your own campaign. Making a donation under your name can also be a great way to encourage others as it shows you’re supporting your own cause, not just asking others for help.

25.) GET INTO THE COMPETITIVE SPIRIT! It’s not a competition, but make an effort to connect with other MTeamers in our private Facebook group where we share a weekly leaderboard each Friday. A friendly spirit of competition can help push us along.

MTEAMERS: If you haven’t signed up yet, be sure to join our closed Facebook group for MTeamers where we’re encouraging all of you to share tips with one another.

Candyce CarragherComment
10 Minutes with Tracy Figueiroa Rego

Meet Tracy and her daughter, Mia, who has an impressive collection of sunglasses, the most glamorous hair we’ve ever seen on a 3-year-old and a very contagious smile. She was born with an incredibly rare genetic condition called Bohring Opitz Syndrome, but we’ll let Tracy tell you more about that below, along with a few of the things Mia loves most and one way we can all help make the world a more inclusive place her and her family as well as others with special needs.

 
Tracy Figueiroa Rego - Bohring Opitz Syndroms
 

MTEAM: Tell us a bit about yourself and your family.
TRACY FIGUEIROA REGO:
My name is Tracy and I am the mother of two kids, Henry and Mia. Henry will be five next month and Mia, three.  I am a full time mom, care taker and work part time. I am originally from Indiana and my husband Tomás is from Portugal. My husband and I just finished foster classes and will be fostering a boy soon; our goal is to adopt.  

I work part time for an after school program. I keep a pack and play in my classroom so Mia is comfortable.  The kids are young, 5-7 year olds, and love having her in the room. They ask a lot of questions especially when they see me feeding her by tube. I am honest with the children and explain that Mia is severely disabled, both mentally and physically. They know she is non-verbal and non-mobile but they don’t understand it’s forever.  Throughout the day all the kids will visit her crib and smile. They do not understand her condition, but I believe they know she’s special. 

Mia - Bohring Opitz Syndrome
Mia - Bohring Opitz Syndrome

MTEAM: Mia was born with Bohring Opitz Syndrome (BOS). How common is it? Can you explain a bit about what it is exactly for those who are unfamiliar and how it has manifested itself in Mia’s life in particular? 
TFR: Mia received her feeding tube at seven months and was diagnosed with BOS by her first birthday.  Mia wears glasses and cannot hold her neck up, swallow, suck a pacifier, hold toys, roll over, sit up, walk, talk or feed orally.  She is extremely tiny; she weighs 12 pounds and is turning 3-years-old April 28th. 

BOS is an extremely rare genetic syndrome. There are approximately 150-200 cases worldwide. This syndrome is diagnosed by genetic testing and is a mutation in the ASXL1 gene. The leading cause of death is respiratory infections. Children with BOS can have feeding difficulties, recurring respiratory infections, sleep apnea, developmental delay, failure to thrive, abnormal hair density, Wilm’s Tumors, Brain abnormalities, silent aspiration, and the list goes on. 

Mia - Bohring Opitz Syndrome
Mia - Bohring Opitz Syndrome

MTEAM: Tell us a bit more about Mia! (How old is she? What does she love most? What makes her happy? What makes her uniquely Mia??)
TFR:
Mia has the sweetest personality!!  She smiles ALL the time and is known for her beautiful hair, eyes and fashion! She never cries and will give anyone who touches her toes the warmest smile. She loves to snuggle her big brother, long walks to look at the palm trees and she loves lights. 

Mia - Bohring Opitz Syndrome

MTEAM: What’s a typical day in Mia’s life like?
TFR:
Mia likes to stay awake most of the night and sleep during the day.  I try and stay awake with her until 1am then she’ll lay in her pack and play next to our bed and play with her toys until 4am. She typically sleeps 4am-1pm. A typical day is therapy, taking both kids to playgrounds or other activities, work, then bath time.  Mia has a special bath chair to help us bath her. She also has a wheelchair, back brace, leg braces and a stander. 

Mia - Bohring Opitz Syndrome
Mia - Bohring Opitz Syndrome

MTEAM: What have been some of your biggest challenges and the best rewards along your journey with Mia so far? 
TFR:
It took months to figure out her diet. She was on a feeding tube formula that made her extremely constipated and in pain daily.  We now give her a blended diet and she’s doing great. Another challenge is getting Mia to move. She does not move much on her own, so we want to constantly move her arms, legs and torso to help blood flow and quality of life. 

Mia is amazing and has touched so many lives.  She reminds people to slow down and enjoy the little things. 

Because of Mia, we have held multiple fundraisers and raised over 15k for the BOS foundation. 100% is given to the foundation and the funds were raised through friends, family and even strangers since her diagnosis.  When people meet Mia they fall in love with her and she leaves a lasting impression. 

Mia - Bohring Opitz Syndrome
Mia - Bohring Opitz Syndrome

MTEAM: What advice would you offer to other parents who are just finding out about a Bohring Opitz Syndrome diagnosis?
TFR:
We have a Facebook support group for BOS parents. Once a month, someone new will be added and you remember the day when you first received the diagnosis. It’s tough. You know how they feel and how scared they are, but we show each other support, help answer the never-ending questions and share challenges.  They become extended family. I always tell them it’s scary at first, but you will find love for that child that you’ve never felt before. The very small achievements they accomplish will light up your world. 

Mia - Bohring Opitz Syndrome

MTEAM: How would you like to hear other parents respond if their own children notice and ask questions about Mia’s physical differences?
TFR:
We get asked a lot of questions, especially by kids when Mia is being fed by her feeding machine because they see the bag and tube. Most parents will say “Sorry!!” And I’ll tell them, “It’s ok!! We want them to ask!”  And I will kneel down and talk directly to the child and explain what is happening.  Every child I’ve done this with smiles and says Aweee, she’s so cute” and looks a little confused but happy that I’ve answered their question. Before Mia, I had never seen a feeding tube, so we make it a point to tell everyone about her life and syndrome. One response I hate is when people say “I am so sorry”. Please never do that to a special needs parent. We love our children just like everyone else and we are very proud of her just the way she is. 

Mia - Bohring Opitz Syndrome

MTEAM: What key changes would make this a more inclusive world for children with Bohring Opitz Syndrome?
TFR:
If you see someone struggling, make eye contact and offer a helping hand. I have been with both kids and Mia in her wheelchair and people will avoid eye contact with me, but stare at Mia. We also struggle with people offering to hold the door as we enter restaurants, businesses, ladies rooms, etc. It is challenging because Mia’s wheelchair weighs a lot, so it’s hard to push it and hold the door at the same time. I know it’s upsetting to see someone so small in a wheelchair, but please don’t avoid us and help when you see someone in need.

Mia - Bohring Opitz Syndrome
Mia - Bohring Opitz Syndrome

MTEAM: Share a memory of one of the times you’ve been especially proud of Mia.
TFR:
Just this morning Mia had a bad seizure and fell asleep smiling at me. She and her BOS brothers and sisters are the strongest little humans I know. 

Mia - Bohring Opitz Syndrome
Mia - Bohring Opitz Syndrome

MTEAM: What’s one thing you’d like the world to know about Mia or Bohring Opitz Syndrome or medically complex or fragile children generally?
TFR:
Medically fragile children are as precious as a typical child. You do not celebrate the same milestones, but you find joy that you never knew you could have. Most will never ask you for the newest video game, bike or iPad because all they want and need is your unconditional love. 

Bohring-Opitz Appreciation Day is April 6th. 

10 Minutes with: Jessa Marmol

Jessa, her husband Marvin, and 4-year-old Theo live in the Philippines and she fights daily to understand Theo’s medical complexities, take him to necessary appointments and do all she can to give him the best life possible wile Marvin works hard to support the family financially. Below, she talks about Theo’s journey with Cerebral Palsy and Epilepsy along with several other secondary conditions, what a day in their life is like and a few things that could make life a bit better for both of them as well as other children with similar conditions for whom Jessa also advocates.

 
10 Minutes with Jessa Marmol.png
 

MTEAM: Tell us a bit about yourself and your family.
JESSA MARMOL:
I am Jessa C. Marmol, a stay-at-home and hands-on mom, married to Marvin Marmol who is a private employee. We are from the Philippines. I do a lot of research about Theo’s condition most of the time, which I truly enjoy. I am helping my husband sustain the cost of medication of our son by selling fundraising items and securing help from private and government agencies. I am not just a mom who wants the best for her own kid; I’m also an advocate for other babies with Cerebral Palsy and Epilepsy here in the Philippines. Together with my husband, our son Theo and volunteers from a private clinic, we conduct programs and activities that help families with children who have Cerebral Palsy and Epilepsy learn more about their respective conditions and how to properly treat them, for free. 

jessa and Theo.jpg

MTEAM: Your son Theo has several different diagnoses. Can you explain these to us in a way that we can understand? How do they impact his (and your own) daily life?
JM:
Theo was a premature baby, born at 35 weeks on February 20, 2015. He stayed for 23 days in NICU. To date, he has a working diagnosis of Secondary Spastic Quadriplegic Cerebral Palsy / Focal Epilepsy with several secondary conditions: Reversible Obstructive Airway Disease (asthma), Laryngo-Tracheo-Malacia, Allergic Rhinitis, Cortical Blindness or CVi and Astigmatism. 

10 Minutes with Jessa Marmol

These conditions happened because he suffered Hypoxia or lack of oxygen to the brain, Meconium Aspiration Syndrome and Sepsis since I had an emergency caesarian delivery as per my gynaecologist’s advice due to a hormonal imbalance resulting in Pre-eclampsia. From there, Theo had a congenital heart disease, had a pneumothorax which resulted to his right lung collapsing, seizure episodes, Intraventricular Hemorrhage grade 4, Subarachnoid Hemorrhage and Moderate Communicating Hydrocephalus (no shunt) that almost led to Theo’s loss of life. He was revived twice during his NICU days.

But God is good. He treated all of Theo’s conditions one at a time. This journey tested our faith and made us strong and brave like Theo when he was fighting for his life. We were challenged, but we’re also hopeful that if we trusted God every single day, everything would be alright.

 
10 Minutes with Jessa Marmol
 

MTEAM: Tell us more about Theo! (How old is he? What does he love most? What makes him happy? What makes him uniquely Theo??)
JM:
Theo just turned 4-years-old this February 20. These past few months, he has loved and enjoyed our DIY aquatherapy, but we stopped it recently because of the cold season. He’s happy when I tell him that we are going to go out to visit his teachers or to the arcade when we do our main shopping. He also loves to watch a witty little girl on social media. 

What makes him unique is that, despite his condition, he really is smart. He can communicate in his own way through his facial expressions and voice intonations and he keeps on moving if he needs something to do. Theo is a vegetarian too and consumes little milk.

10 Minutes with Jessa Marmol

MTEAM: What’s a typical day in Theo’s life like?
JM:
Our days are full of DIY therapies inspired by social media. We also spend time on the usual mneals and activities. Theo is following a normal number of meals, eating three times a day. It is the ideal eating habit and it is also the easiest and a less tiring pattern for me. Before, we spent two hours on feeding time per meal, but now he can drink his smoothie diet and take his medicines in 10 minutes and spend just 30 minutes eating his puree. We only attend formal Bobath Therapy once a week because we cannot make the recommended 2-3x sessions due to financial constraints. However, that is not a reason to stop doing therapies; I make sure to ask his therapist and learn the basic approach to do the same at home.

10 Minutes with Jessa Marmol

MTEAM: You’re currently fundraising for something called Hyperbaric Oxygen Therapy. What is this and how will it benefit Theo? You’re also looking for sponsorship for a medical stroller. Tell us a bit about this too.
JM:
Hyperbaric Oxygen Therapy is one of the newest treatments for Cerebral Palsy and it has been proven in other countries to really help the brain’s hypoxic disorder and epilepsy as well as improve the upper respiratory system. That means Theo’s brain will get enough oxygen. There’s a child with Cerebral Palsy I know here in the Philippines who is having this therapy. There’s been development after a series of HBOT sessions and her milestones are noticeable. That’s why I’d like to try it with Theo. As his parents, we want to give him a better life. (If you’d like to contribute to Jessa’s Simply Giving campaign, click the link above).

I am also looking for a sponsor for a lightweight medical stroller too because we seldom experience having a companion come along to our check-up routines and therapies and our visits to secure medical help from private and government offices, thus making it a little difficult when just the two of us go out. My husband has to be hardworking to sustain our primary needs and the costs of Theo’s medication, so he can’t always accompany us. I am using a sling now that is meant for babywearing to make our travel easier, but it is not bearable carrying him far anymore because of his heavy weight. He is big for his age. The medical stroller will also help Theo to have perfect posture when sitting, even when we are outside, make him comfortable whenever we are on an outreach program or when we are waiting for his medical appointments. Lastly, the stroller will simply make our travel easier.

10 Minutes with Jessa Marmol

MTEAM: What have been some of your biggest challenges and the best rewards along your journey as Theo’s mom so far?
JM:
One of the typical challenges is that I have to keep myself strong and healthy. I am carrying him daily from feeding, bathing and other activities, so I can’t be sick and I have to be okay even if I’m not. Other than that, I have to always think about how I will make Theo’s life better. As a parent of a child with special needs, I have to keep in mind the word bravery. I have to be brave to hide my true feelings, hold my emotions to be focused and be strong during every situation in our journey and face all the challenges head on. I have to be an optimist at all times and instill in my mind that no matter how hard the situation is, I trust myself and Theo’s abilities because God is always on our side. I have to be a persistent parent. I have to be fearless in searching for answers, trying my best and learning all about his condition. I have to be an advocate for my own son to change the way how he is able to face his own challenges. 

Seeing Theo’s progress everyday despite his multiple conditions and hearing people say that Theo seems like he does not have a severe condition fuels me to continue to do what I do. Also, I am able to inspire other warrior moms, encourage them and give them hope that even in the hardest part of this journey with our kids, there are ways to keep standing tall.

10 Minutes with Jessa Marmol

MTEAM: How have you been advocating for Theo so far?
JM:
I’ve been like a researcher, scientist, doctor, nurse, nutritionist, therapist and a warrior mom from the day that Theo was born. I do a lot of research and read articles that are relevant to Theo’s condition. I write my personal blog about his Cerebral Palsy/Epilepsy and other health imbalances, proper nutrition and home therapies and developments.  We joined the Celebrity Fashion Show organized by Miss Possibilities Foundation, Inc last December 2017 to spread social awareness for Theo and social awareness to the society that beauty knows no boundaries. We were also invited as guests on one of the local TV shows to spread Cerebral Palsy awareness. I am selling a statement social awareness shirt to fundraise, too.

I started blogging and using social media in May 2016 to share our challenging journey. I continue sharing my advocacy and work with the non-profit organization called Cerebral Palsy Family Awareness Support Group Ph. Inc (CEFASGPH). We organized 11 events within one year; one of our major events was the World Cerebral Palsy Day Philippines 2018.  

We are planning to visit as many places as possible here in the Philippines to show that even if Theo isn’t capable of doing everything a “normal” kid does, he is able to inspire families and spread Cerebral Palsy/Epilepsy awareness with the help of a volunteer Bobath Therapist from the private therapy center, kindhearted sponsors and established organizations who serve as our major sponsors.

10 Minutes with Jessa Marmol

MTEAM: What key changes do you think would make this a more inclusive world for children with complex medical needs like Theo?
JM:
It should start within the families of all children with special needs. Acceptance is the key, but accepting their condition is not the only thing that we should do. Learning intensely about our children’s conditions as a family will be a huge help with campaign awareness and outreach for all of the disoriented families in the special need family community. We (parents of children with special needs) are the ones who should take the initiative to share our journey with the larger community despite what the rest of society does -- the staring judgmental eyes and throwing of insensitive words. By doing that continually, I’m pretty sure that future amazing kids with special needs that they will encounter will never experience what the first special needs family experienced when they meet that person.

10 Minutes with Jessa Marmol

Second, the health institutions and medical practitioners here in the Philippines need to help us to learn as much as possible and conduct more research about conditions like Cerebral Palsy and Epilepsy. We should be passionate and be resourceful in treating our children with multiple conditions.

Third, our government should support, strengthen and develop firm programs for paediatrics to deal with neurological conditions. Support from this institution will help us to sustain their medication to improve their conditions to avoid extreme disability.

If this happens, I’m sure that the other world of special need kids like Theo will flip to a sustainable inclusiveness around the world. Family to community, community to society, and society to the world.

10 Minutes with Jessa Marmol

MTEAM: Share a memory of one of the times you’ve been especially proud of Theo.
JM:
This picture below reminds me how strong he is. Theo had an oxygen support the first five months of his life like he had when he was in NICU. He was able to remove his ventilator on his own and wean off his oxygen when he was 5-months-old. And even though Theo has an oral gastric tube and nasal canula during these five months, I wasn’t able to let him suck on a pacifier for a long time. When he did, he would suck for about a second and when he realized that there was no milk coming out, he would spit it out and cry loudly. Such a smart little one. 

 
10 Minutes with Jessa Marmol
 

MTEAM: What’s one thing you’d like the world to know about Theo?
JM:
Theo is a smart, kind, cooperative, strong and brave boy. Smart because despite his complex condition, he’s still be able to communicate in his own way. He’s kind and cooperative because even if he is unwell, I don’t have a problem feeding him. He won’t cry and will just have his meal by drinking and eating his smoothie and blended food. Theo is a mouth feeding boy despite his airway defect.

Theo is the strongest of the strongest and bravest of the bravest kids I know. He’s facing a lot of challenges along his journey, but he remains strong and brave like the way he has been since he was born. 

Connect with Jessa on Instagram
Connect with Jessa on Facebook
Jessa’s Simply Giving Campaign

Candyce CarragherComment
Meet the MTeam: Steve & Linda Lowy

Meet Steve and Linda Lowy, returning MTeamers who are ready to travel from their home in London to Hyannis Port, MA to tackle another Best Buddies Challenge with us in 2019! Steve is also the CEO of Anglo Educational Services in London, who are one of the MTeam’s corporate sponsors. We thank them for their incredibly generous $5,000 donation to our campaign this year.

Below, Steve and Linda talk about why they joined the MTeam, what keeps them motivated both mentally and physically and how they are training now to take the challenge in June.

 
Meet the MTeam - Steve and Linda Lowy
 

MTEAM: When and why did you decide to join the MTeam? 
STEVE & LINDA LOWY:
The team captain John is both persuasive and inspirational in equal measures. We did the Best Buddies Challenge race two years ago on a tandem which was a challenge, but very rewarding. We have been following the progress and the team since and just felt we should do it to support the wonderful cause.

Meet the MTeam - Steve and Linda Lowy

MTEAM: Why is the MTeam and the Best Buddies mission important to you?
S&LL:
Coming from the UK and Sweden, we are very lucky to have national health systems that try to support kids with various conditions such as those experienced by the people supported by Best Buddies. We both feel the charity does so many good things to help to make their lives more fulfilling and enjoyable. It is a no-brainer to support them. 

Meet the MTeam - Steve and Linda Lowy

MTEAM: What’s one thing you’ve learned from being part of the MTeam community?
S&LL:
It is a team that is very passionate about their cause!

Meet the MTeam - Steve and Linda Lowy.PNG

MTEAM: What makes the MTeam special? What would inspire people to join you?
S&LL:
It genuinely feels like a team of people who are all working together, no matter what physical capacity, to support the charity. 

Meet the MTeam - Steve and Linda Lowy

MTEAM: Did you walk, run or ride in the last Best Buddies Challenge? Describe the atmosphere of the event for us!
S&LL:
We did 100 miles on a tandem in 2017 that was both a challenge physically and for our marriage ;-) but the atmosphere was amazing!

Meet the MTeam - Steve and Linda Lowy

MTEAM: Tell us about your training regime and how you prepare yourself for the physical challenge.
S&LL:
Since we live in London, we don’t cycle here but we are both doing 3/4 spin classes a week combined with HIIT training and 5/10k runs to keep stamina going. Linda is a regular in the yoga studio and Steve plays tennis and football regularly too.

Meet the MTeam - Steve and Linda Lowy

MTEAM: Mentally, what helps you reach the finish line and keep pushing yourself toward your goals? 
S&LL:
The fact we are helping others.

MTEAM: How did you feel when you crossed the finish line last year?
S&LL:
Relieved, rewarded and happy we could contribute to a great cause.

Meet the MTeam - Steve and Linda Lowy

MTEAM: What’s your best piece of advice for MTeam newbies and one piece of advice for returning MTeamers? 
S&LL:
Just go for it. Stretch yourselves and make sure you remember you are doing it for a wonderful cause.

Meet the MTeam - Steve and Linda Lowy

MTEAM: Share an MTeam memory that has been the most powerful and inspiring for you so far.
S&LL:
Being treated to the smiles of the young people we were helping throughout the route of the cycle ride. 

Candyce CarragherComment
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
5.png

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.

Shaina - Kennett - FOXG1 - 4.jpg

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. 

 
Shaina - Kennett - FOXG1 - 5.jpg
 

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?! 

 
Shaina - Kennett - FOXG1 - 6.jpg
 

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.

 
Shaina - Kennett - FOXG1 - 7.jpg
 

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.

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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!

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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.

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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