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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.”

Emily Spears Interview - FOXG1 Sibling.JPG
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
Happy New Year & 2019 Goals

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

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

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

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

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

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

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

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

Some of our favorite blog posts and memories:

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

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

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

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

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

Some of our favorite blog posts and memories:

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

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

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

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

Meet a few of the MTeamers:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Meet the MTeam: Candyce Carragher

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

Meet the MTeam: Candyce Carragher

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

Meet the MTeam: Candyce Carragher

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

Meet the MTeam: Candyce Carragher

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

Meet the MTeam: Candyce Carragher

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

Roberto Valasquez and Dan Sullivan.jpg

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

Meet the MTeam: Candyce Carragher

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

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

Meet the MTeam: Candyce Carragher

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

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

Meet the MTeam: Candyce Carragher

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

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

Candyce Carragher
10 Minutes With: Natalie Weaver

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

 
10 Minutes with Natalie Weaver.png
 

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

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

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

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

10 Minutes with Natalie Weaver.JPG

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

10 Minutes with Natalie Weaver.PNG

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

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

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

10 Minutes with Natalie Weaver.JPG

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

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

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

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

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

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

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

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

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

10 Minutes with Natalie Weaver.jpg

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

10 Minutes with Natalie Weaver.jpg

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

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

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

10 Minutes with Natalie Weaver.JPEG

Follow Natalie and her family on:

Website
Twitter
Instagram
Facebook
YouTube

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

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

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

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

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

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

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

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

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

 
MTeam Donation of Tobii Dynavox PCEye Plus.jpg
 

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

MTeam Donation - Tobii PCEye Plus.JPG

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

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

 
MTeam Donation - Tobii PCEye Plus.jpg
 

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

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

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

Candyce Carragher
10 Minutes With: Ali Collins

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

 
10 Minutes with Ali Collins and Moe - FOXG1 Interview.png
 

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

Photo by  Leah Britton Photography  in Jacksonville Florida

Photo by Leah Britton Photography in Jacksonville Florida

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

Photo by  Leah Britton Photography  in Jacksonville Florida

Photo by Leah Britton Photography in Jacksonville Florida

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

Photo by  Hanna Hill Photography  in Durham North Carolina

Photo by Hanna Hill Photography in Durham North Carolina

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

Photo by  Hanna Hill Photography  in Durham North Carolina

Photo by Hanna Hill Photography in Durham North Carolina

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

Photo by  Leah Britton Photography  in Jacksonville Florida

Photo by Leah Britton Photography in Jacksonville Florida

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

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

Photo by  Hanna Hill Photography  in Durham North Carolina

Photo by Hanna Hill Photography in Durham North Carolina

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

Photo by  Hanna Hill Photography  in Durham North Carolina

Photo by Hanna Hill Photography in Durham North Carolina

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

Photo by  Leah Britton Photography  in Jacksonville Florida

Photo by Leah Britton Photography in Jacksonville Florida

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

Photo by  Hanna Hill Photography  in Durham North Carolina

Photo by Hanna Hill Photography in Durham North Carolina

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

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

Photo by  Leah Britton Photography  in Jacksonville Florida

Photo by Leah Britton Photography in Jacksonville Florida

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

Photo by  Hanna Hill Photography  in Durham North Carolina

Photo by Hanna Hill Photography in Durham North Carolina

Connect with Ali and her family on:

YouTube
Facebook
Twitter
Instagram

A Best Buddies Story: Timothy Rosario

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

 
A Best Buddies Story - Timothy Rosario.png
 

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

Best Buddies Ambassador Timothy Rosario

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

Best Buddies Ambassador Timothy Rosario

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

Best Buddies Ambassador Timothy Rosario

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

Best Buddies Ambassador Timothy Rosario

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

Best Buddies Ambassador Timothy Rosario

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

Best Buddies Ambassador Timothy Rosario

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

Best Buddies Ambassador Timothy Rosario

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

Best Buddies Ambassador Timothy Rosario

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

Best Buddies Ambassador Timothy Rosario

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

Best Buddies Ambassador Timothy Rosario

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

Candyce Carragher
10 Minutes with: Jennifer Leonard

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

 
10 Minutes with Jennifer Leonard.png
 

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

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

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

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

Abigail and Meredith Lewis at Miracle League

Abigail and Meredith Lewis at Miracle League

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

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

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

Abigail and her sister Corinne

Abigail and her sister Corinne

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

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

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

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

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

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

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

 
Abigail in her dance recital costume

Abigail in her dance recital costume

 

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

Abigail's First Communion family picture

Abigail's First Communion family picture

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

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

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

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

Abigail and Santa 2017

Abigail and Santa 2017

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

 
Abigail and Corinne

Abigail and Corinne

 

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

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

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

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

 
Chilling at the Stoneham Zoo

Chilling at the Stoneham Zoo

 
Candyce Carragher
Our Favorite Sources for Healthy Recipes

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

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

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BLOGS

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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COOKBOOKS

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

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

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

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

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

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

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

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

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

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

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

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

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OTHER

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

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

Candyce Carragher
10 Minutes With: Julia Toronczak

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Candyce Carragher
A Best Buddies Story: Joshua Felder

Meet Josh Felder, an enthusiastic Advanced Ambassador for Best Buddies. Follow Josh on social media and you'll no doubt hear him say: “We’re in it to win it with inclusion.”

 
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We caught up with Josh to find out what this motto means to him personally, what memorable activities he's been able to get involved with through his position with Best Buddies and how he sees his career developing in the future. 

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MTEAM: Tell us a little bit about yourself!
JOSHUA FELDER: 
My name is Joshua Felder and I am an Advanced Ambassador for Best Buddies of Tamp, FL. I enjoy sports and public speaking. I am a natural athlete (I was a member of the high school track team and swim team) and an excellent hip-hop dancer. I also danced on stage with the Back-Pack Kid, at our recent Friendship Walk.

Joshua Felder Interview - Best Buddies Ambassador

MTEAM: When and how did you become an ambassador for Best Buddies?
JF: 
During my senior year in high school, I informed the high school Best Buddies Faculty Advisor that I wanted to become an Ambassador. The Faculty Advisor signed me up online and I later began attending Ambassador trainings to enhance my public speaking and leadership skills. 

Joshua Felder Interview - Best Buddies Ambassador

MTEAM: What are some of the coolest things you get to do as an ambassador for Best Buddies?
JF: 
Some of the coolest things I’ve done are co-hosting the Best Buddies Friendship Walk, promoting Best Buddies on local radio stations, and giving speeches at Best Buddies events.

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MTEAM: What do you love most about the Best Buddies? How have they helped to support you?
JF: 
What I love most about Best Buddies is the fact that they provide opportunities for lasting friendships and leadership development. I now have lots of friends and numerous opportunities to speak at Best Buddies events.

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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? 
JF: 
I’m hopeful that in the near future, I will have a paid position with Best Buddies. I’d like to have a public speaking career with Best Buddies.

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MTEAM: How would you explain Best Buddies to someone who has never heard of the organization before?
JF: 
Best Buddies is a worldwide organization that helps individuals with intellectual and developmental disabilities find one-to-one friendships, employment, and develop leadership skills. This nonprofit organization was founded in Georgetown in 1989, by Anthony K. Shriver.

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MTEAM: Have you met anyone through Best Buddies who really inspires you? Who and how so?
JF: 
Tampa, FL Global Ambassador, Kellie Howard, is a great inspiration for me. She gives me advice on leadership skills, encourages and supports me at Best Buddies events, and we have developed a lasting friendship.

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MTEAM: You always say, “We’re in it to win it inclusion.” What does this mean to you personally?
JF: 
It means that persons with intellectual and developmental disabilities (IDD) should be treated equally and included. We deserve the right to be heard, we deserve the right to have jobs, we deserve the right to contribute to our community and become leaders in our community.

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MTEAM: Do you have a favorite memory from your time with Best Buddies?
JF: 
My favorite memory is from April 2018 when I co-hosted the Friendship Walk and danced on stage with the Back-Pack Kid.

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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?
JF: 
Please join me and the whole world to support Best Buddies so that people with IDD. can be moved to a new acceptance in their families and community. Your contribution and team efforts will make a positive impact in the lives of people with IDD. 

Candyce Carragher
Meet the MTeam: Xavier Sykes
 
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Meet Xavier, one of the MTeam’s top fundraisers for Best Buddies International last year. He came all the way from Maryland to Massachusetts to participate in the Hyannis Port Best Buddies Challenge with us and cycled an impressive 50 miles. Amazingly, Xavier’s been involved with Best Buddies since middle school when he was vice president and then president of his chapter. Below, he talks about how this experience stuck with him, shares some of his top fundraising tips and tells us what makes the MTeam special.

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MTEAM: When and why did you decide to join the MTeam? 
XAVIER SYKES:
I Joined the MTeam on February 2nd, 2018. I joined for a couple of reasons. First, I was going out of state to attend the Best Buddies Challenge Hyannis Port and I wanted to feel like I was a part of a team. Secondly, I loved seeing the team camaraderie at other Best Buddies Challenges. I was originally part of Team Audi when the Best Buddies Challenge was in Washington, D.C. Lastly, I looked into the many different teams and the MTeam stuck out to me. I loved the motto #MilesForSmiles.

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MTEAM: Why is the MTeam and the Best Buddies mission important to you?
XS:
The MTeam and Best Buddies’ mission is important to me because it involves and discusses inclusion for people who may not be your average everyday people. Personally, I have been involved with Best Buddies since my years in middle school (Vice President, President). Since then, I have gained a better knowledge of people with intellectual and developmental disabilities. With this knowledge, I am able to educate a broader audience about Best Buddies’ and the MTeam’s mission.

Meet the MTeam - Xavier Sykes

MTEAM: What’s one thing you’ve learned from being part of the MTeam community? 
XS:
One thing I learned from being a part of the MTeam is that we are all family. I came from Maryland to do the challenge and from the moment I met John, Greg, Laura, Meredith, and Candyce, they all made me feel like family and always helped me with the things I needed to be successful.

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MTEAM: What makes the MTeam special? What would inspire people to join you?
XS:
One of the main things that makes the MTeam stand out is all of the special amenities that we get to have like water bottles, t-shirts, cycling bibs/shorts, social media shout outs, etc. The MTeam sets a high standard in making sure their participants feel like they have the best team around. People would be inspired to join me when they see the pictures and donation follow ups that are posted daily.

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MTEAM: Did you walk, run or ride in the 2018 Best Buddies Challenge? Describe the atmosphere of the event for us! What will you do 2019?
XS:
I originally was scheduled to do 100 miles, but ended up doing 50 miles due to becoming sick along the ride. The atmosphere was beyond amazing. The beach scenery at the start of the ride was beautiful. The after party, dinner, and concert was beyond my imagination. Overall, this event was worth the flight down from Maryland. I look forward to doing the 50 miler again in 2019, with the hopes of changing my mind and doing the 100 miler.

Meet the MTeam - Xavier Sykes.jpg

MTEAM: Tell us about your training regime and how you prepare yourself for the physical challenge.
XS:
Due to the short time span from registering to the actual ride date, I was unable to get full proper training in last year. What I did do though was cut off sodas from March to June. I saw a dramatic weight change. I also tried my best to get into the gym and do some indoor cycling. Looking forward, I intend on doing the same again.

Meet the MTeam - Xavier Sykes.jpg

MTEAM: Mentally, what helps you reach the finish line and keep pushing yourself toward your goals?
XS:
Mentally, I think about all of the people that watch what I do and are motivated by me. I also think of the times where I had a buddy during my middle school program; he would not want me to give up. Finally, I think of all the people with intellectual and developmental disabilities all around the world who would want to see me do well.

Meet the MTeam - Xavier Sykes.jpg

MTEAM: How did you feel when you crossed the finish line last year?
XS:
I felt exhausted and relieved. I also felt a sense of pride in that I did not give up. I loved seeing all of my MTeam family there at the finish line supporting me. Best feeling ever!

Meet the MTeam - Xavier Sykes.png

MTEAM: You were one of the MTeam’s top 10 fundraisers in 2018, raising over $2,000 for Best Buddies. Amazing work! Do you have any tips for new fundraisers joining us in 2019?
XS:

1. Use Social Media and hashtags (#MTeam, #MilesForSmiles, etc), post daily updates on how your fundraising is going, etc.
2. Partner with local coffee shops and see if you can place a fundraising tub in their establishment. 
3. Attend any parades and set up a table.
4. Ask coworkers for donations. 
5. Email, email, email!!! Follow up too!
6. Texting (we do it every day anyway).

Meet the MTeam - Xavier Sykes.png

MTEAM: Share an MTeam memory that has been the most powerful and inspiring for you so far.
XS:
Meeting Meredith was a powerful moment for me. To see how happy she was and the energy around her was amazing. Also, the photo op with the whole team was pretty epic! 

Find Xavier on Instagram: @akidnamedzay

Candyce Carragher
October: Celebrating National Disability Employment Awareness Month

Hello October. A month of crispy golden leaves scattered across sidewalks, gourds and ghouls decorating porches and horror films creeping through our Netflix recommendations. 

 
October is National Disability Employment Awareness Month
 

It’s also a very important time because it’s a month that the government has set aside to do something we should be doing all year round: celebrating a workforce that’s rich with people of all abilities and raising awareness of how important it is to ensure that all people with disabilities have opportunities for integrated employment.

This year’s National Disability Employment Awareness Month theme is “America’s Workforce: Empowering All”. Best Buddies — the organization that the MTeam supports through fundraising efforts and participation in the Best Buddies Challenge each year — shines in this area for people with intellectual and developmental disabilities.

Best Buddies Jobs

Did you know that 81% of adults with developmental disabilities do not have a paid job in the community? The Best Buddies Jobs program is growing, with over 1,000 capable, talented and driven Best Buddies participants in jobs that match their skills, talents and interests. They’re paying taxes, spending an average of 22 hours per week on the job and earning an income at an average of $12.28 per hour, which tops the minimum wage in many US cities.

Best Buddies’ examples (like the story of Michael Dykman & Genentech) show that employers who hire individuals with IDD benefit just as much as our participants. "Smart employers know that including different perspectives in problem-solving situations leads to better solutions,” U.S. Secretary of Labor Alexander Acosta said. “Hiring employees with diverse abilities strengthens their business, increases competition and drives innovation."

Photo:  Best Buddies Jobs participant Harry with CAPA The Global Education Network CEO and MTeam Captain John Christian at the CAPA offices.

Photo: Best Buddies Jobs participant Harry with CAPA The Global Education Network CEO and MTeam Captain John Christian at the CAPA offices.

The MTeam’s biggest sponsor, CAPA The Global Education Network, is one of many employers benefitting from the Best Buddies Jobs program and we endorse it fully.

“Diversity and inclusion has always been an important personal value,” said CAPA The Global Education Network CEO and MTeam Captain John Christian. “No matter how a student identifies, CAPA’s mission is to give as many students as possible the opportunity to study abroad because we know that affects the world positively. Best Buddies does something very similar. They give people with IDD employment opportunities. They spread awareness so that everyone has a seat at the table. The more we are around people who are different than us, the more accustomed we become, the less afraid we are, the more connections we can make. This is how we make the world a better place.”

Photo:  Best Buddies offer leadership development opportunities for people like  Jack Mayor , a fantastic public speaker who now travels around sharing his story.

Photo: Best Buddies offer leadership development opportunities for people like Jack Mayor, a fantastic public speaker who now travels around sharing his story.

There’s a great read from Meriah Nichols called “Why Hire Someone With A Disability” written from her perspective as a a career counselor and member of the disability community. She talks about everything from the number of people with a disability who have a strong resume to the “out-of-the-box” thinking mentality that many people who were born with disabilities have cultivated over the years to the richness that diversity brings to the workplace.

And while there’s progress and there’s much to celebrate, there’s still a lot of work to be done in this area, to open up opportunities that will benefit both the disability community and the employers who are open-minded and intelligent enough to welcome them on board.

Will you join us?

Candyce Carragher
10 Minutes With: The Able Fables

Meet Dr. Nicole Kmieciak, whose project and movement called The Able Fables advocates for inclusion, celebrates ability over disability and gives parents tools to talk about the beauty of diversity with young children. The Able Fables is a series of children's picture books, written by Nicole, the first to be released in November this year.

 
10 Minutes with The Able Fables.png
 

Below, she tells the story about what inspired her to start The Able Fables, shares some insight into the books that she's already written and talks about the overarching messages she hopes her work will help instil in children at an early age so they will grow up and be able to impact the world to make it a more inclusive place in every aspect of life.   

The Able Fables Interview with Dr. Nicole Kmieciak

MTEAM: Tell us a bit about yourself.
DR. NICOLE KMIECIAK: My name is Nicole. I am originally from Illinois, but live in Nashville, TN. I received my doctorate in occupational therapy, and work in behavior/mental health. I have a big, beautiful family, and enjoy spending time with them whenever I can. Otherwise, you can find me exploring new cities on the weekend, camera in hand, in search of tacos! I also love fishing with my dad, thrift shopping, and being out on the water.

The Able Fables Interview with Dr. Nicole Kmieciak

MTEAM: You started a movement that you’ve called the Able Fables with the tagline “We’re all able”. What do you hope to accomplish?
DR. NK: 
Ha, tough question! I am a bit of a ‘gigantic dreamer’ thus the name of our first book, Gary’s Gigantic Dream. I’ll do my best to summarize what I hope to accomplish with our inclusive movement & children’s picture book series! I hope to:

1. Increase children's sense of self worth, understanding their value in this world. 
2. Decrease stigma of mental, psychosocial, and physical disabilities, reducing bullying. 
3. Allowing children of all abilities to see themselves as main characters in the earliest form of media. 
4. Facilitate conversation about inclusion between parents and their children. 
5. Cultivate friendships that value and flourish off differences.
6. Create a more inclusive community.
7. One day build a universally designed playground!

The Able Fables Interview with Dr. Nicole Kmieciak

MTEAM: When did you start Able Fables and why?
DR. NK: 
I started writing for The Able Fables when I was in my last year of my OTD (Occupational Therapy Doctorate) program. That would have been 2016-2017. The first book came to me while I was studying in my favorite coffee shop, Eighth & Roast. And when I say it came to me, it was literally as if God wrote it. I had no plan, not even a background in writing. It effortlessly flowed from my pen to paper in 30 minutes. That is why I like to think of The Able Fables as “a God thing.” However, when I became determined to make The Able Fables an inclusive movement & book series, my motivation was crystal clear: LACK OF ACCESS AND USABILITY! 

One day I took a power wheelchair to a local coffee shop with a classmate for our assistive technology class. Our case studies were ALS and Duchenne's Muscular Dystrophy. We were to use the chair within the space & measure accessibility. Here’s what happened: The parking space was incorrect, no room for the ramp. The sidewalk was too narrow. A wheelchair would not be able to turn to enter the front door, and even if the sidewalk was correct, the door was too narrow, and the threshold was too high. We could not even get in.

I cried. To me us not being able to enter was the same as saying “you are not welcome here.” I am not a wheelchair user. I do not know how it feels to be turned away from a business because it is not useable. I am able to park, enter, eat, access the bar, use the bathroom, but a lot of people cannot, and that is NOT OKAY. 

I spent months studying and completing research on universal design in the community (parks, restaurants, hotels, etc). A change needs to be made, and I have the power to do something about it! So, I am writing children’s books, because moms read books and so do dads. Brothers read books, and so do sisters, and babysitters, and teachers, and grandparents, and aunts & uncles. What a great way to educate people of all ages!

The Able Fables Interview with Dr. Nicole Kmieciak

MTEAM: Tell us the story behind the name The Able Fables!
DR. NK:
 I had already written the first book (which is actually the second in the series). When I wrote the first book, it was just going to be a stand alone book. I had no intention of a series, but, one morning I was making coffee, thinking about what baby names I liked, no joke. One of the names I liked was Mabel, and I thought to myself, (I have no idea why) “What rhymes with Mabel?” I guess I wanted to see if there was another similar name I liked better. So I started with A: Able, Bable, Cable, Dable, Eable (not a word), Fable.. Immediately, I went to my journal and wrote down The Able Fables, and thanked God baby names were on my mind that morning. Now I knew I had to write a series called The Able Fables!

The Able Fables Interview with Dr. Nicole Kmieciak

MTEAM: You don’t have books for sale quite yet, but you will soon! Can you tell us about the ones you’ve written already? How many?
DR. NK:
 I have five books completed for the series, multiple more in progress! I am waiting to finish the others until I get a few out. What is the series about? I’ll fill you in! Gary, our main character & storyteller gets fitted for a manual wheelchair. After receiving his new chair he is thrilled with his newfound independence; he can now access his environment in a whole new way! He is able! And he is inspired to tell stories of other children & their abilities. He narrates the books that follow. I don’t want to give too much away, but I will say another character uses a power wheelchair, one has a limb difference, & another has anxiety and low self esteem.

I also have 3 others books written that have the same themes of inclusion and diversity, but are not part of The Able Fables series!

The Able Fables Interview with Dr. Nicole Kmieciak

MTEAM: How do The Able Fables stand out from other children’s picture books?
DR. NK:
We stand out in a few ways! 

  1. Our main character has a disability and several of the characters in the following books also have disabilities. They may be hidden or visible. This population is underrepresented in all forms of media and advertising.

  2. Our focus is on ABILITY, not disability. This means you won’t find our books saying, “This is Jenny, Jenny has Spina Bifida, you should be nice to Jenny.” Each character has his/her own ability story, with little mention of the disability itself, because we are strength-based and believe we’re all able!

  3. At the end of each book, we will be featuring real kiddos that share a similarity with the main character. Maybe they used the same type of adaptive equipment, maybe they have the same diagnosis, maybe they play the same sport or have the same interests!

  4. Each book will provide parents with discussion prompts if they with to talk with their child about inclusion & celebrating differences.

The Able Fables Interview with Dr. Nicole Kmieciak

MTEAM: When will the books be released? How are you fundraising to print them? What has the process been like so far?
DR. NK:
 Our first book is on track for the end of November 2018, fingers crossed. As for the following books, that is all to be determined by God’s timing! We’ll see what happens! I have been fundraising by selling t-shirts through Bonfire.com, and have raised $4,000 in six months. We have plenty of designs available; if you would like to check them out you can visit us on Facebook or Instagram. The link to all of our shirts is in our bio! You can also go to Bonfire.com & search The Able Fables.

The Able Fables Interview with Dr. Nicole Kmieciak

MTEAM: You said you’d like a portion of your profits to be donated to an Able Fables playground/playgrounds. Why playgrounds?
DR. NK: 
Yes! Once our first book is out, we will be able to determine the exact percentage. I have a dream to open a universally designed park! I have a theory that lack of education and exposure causes not only a lack of knowledge, but discomfort. I believe that if all kinds of children grow up around all kinds of children, those children will grow up aware and comfortable. Those children will grow up with friends who are of different races, socioeconomic statuses, and abilities. Then when those children become teachers they will teach for all children. When those children become architects they will design for all people. When those children become business owners their spaces will be useful by all people. I believe universally designed parks, playgrounds, museums, and spaces will expose children and parents, increasing their knowledge and comfort level, empowering them to change the world.

The Able Fables Interview with Dr. Nicole Kmieciak

MTEAM: On your website, you offer a monthly download called “Color Me Inclusion”. Tell us what this is all about? Can anyone submit artwork?
DR. NK: 
I do! Color Me Inclusion™ is another way to expose children and parents to inclusion at an early age! The themes for our coloring pages are inclusion, ability, and friendship. Anyone, any age, any ability can donate a coloring page. If you are interested, contact us through our website at www.theablefables.com.

The Able Fables Interview with Dr. Nicole Kmieciak

MTEAM: Do you think we can change the way the world sees disability?
DR. NK:
 I wholeheartedly believe we, as a community, can change the way we view disability! It’s already happening. Target and Tommy Hilfiger offer clothing for all abilities! Also, check out some of my favorite organizations: Changing The Face of Beauty and The Lucky Fin Project. You can watch the video below to get a glimpse into how we can flip our perspective when it comes to the word ‘disability’.

MTEAM: Share a few of the simpler ways that the world could be changed by individuals or small groups of people to become a more inclusive place.
DR. NK: 
12 things you can do to be more inclusive:

  1. If you see a person with a disability, instead of staring, say hello, how are you today? Spark a conversation.

  2. Expose young children to diversity through picture books.

  3. Talk to your children about the strength and beauty of diversity at an early age.

  4. Support non-profits working toward social change.

  5. Volunteer somewhere out of your comfort zone.

  6. Perform random acts of kindness.

  7. Educate yourself on person first language (i.e. Someone experiencing homelessness, a child with autism, a boy with Down syndrome).

  8. If you’ve created a product, seek feedback from multiple users.

  9. If you own a business, form a user focus group to assess accessibility and usability of your space.

  10. Empower others from underrepresented groups.

  11. Choose love over judgment.

  12. Practice empathy.

The Able Fables Interview with Dr. Nicole Kmieciak

Candyce Carragher
A Best Buddies Story: Jack Mayor
 
A Best Buddies Story - Jack Mayor.png
 

Meet Jack Mayor, an enthusiastic Best Buddies Ambassador, who - thanks to training and opportunities that he's found through Best Buddies - is now a very captivating public speaker. Jack travels all over the United States sharing his story about living with Autism, talking about how Josie - who was the President of Jack's high school chapter of Best Buddies - formed a friendship that helped to change his life, and emphasizing the importance of the work that this organization does for kids around the world. 

A Best Buddies Story - Jack Mayor

In the words of Jack from the Best Buddies Nashville Gala 2018: "Best Buddies took my worst days and made them my best." 

Below, Jack shares a bit more of his story with us, including what he loves most about Best Buddies, what it's like being on the Best Buddies Board of Directors and one things he would like the world to know about people who have Autism. 

A Best Buddies Story - Jack Mayor

MTEAM: Tell us a little bit about yourself!
JACK MAYOR:
 My Name is Jack Mayor. I am 18-years-old. I am from Naperville, Illinois. I like to go on the computer and go on Google Maps. I love to drink coffee. One of my favorite sports to do is swimming.

A Best Buddies Story - Jack Mayor

MTEAM: When and how did you become an ambassador for Best Buddies?
JM:
 I was formally asked after giving a speech during my Sophomore year at my high school to become an ambassador for Best Buddies. I officially became a Best Buddies Ambassador after going through training in November 2016. 

A Best Buddies Story - Jack Mayor

MTEAM: What are some of the coolest things you get to do as an ambassador for Best Buddies?
JM:
 I think one of the coolest things that I get to do as an Ambassador for Best Buddies is speak around the country and meet new people. I have made really good friends through Best Buddies. 

A Best Buddies Story - Jack Mayor

MTEAM: What do you love most about the Best Buddies? How have they helped to support you? 
JM:
 I mostly love Best Buddies because everyone in this organization treats each other, including myself, like family. Best Buddies has supported me by encouraging me to pursue my speaking career. 

A Best Buddies Story - Jack Mayor

MTEAM: What made you decide to pursue a career in public speaking? How have your skills progressed over the years and what role has Best Buddies played in this?
JM: 
At my first Leadership Conference, Best Buddies taught me to be a public speaker. The skills that I left there with have been life-changing for me. Best Buddies continues to provide training throughout the year to help me advance my speaking skills. 

A Best Buddies Story - Jack Mayor

MTEAM: You were recently chosen to join the Best Buddies Board of Directors. Tell us a bit about what this involves. 
JM: 
I have the opportunity to see how the company works at all levels from the Friendship program to the Jobs program. I am excited that my opinions about this organization will not only be heard, but hopefully can help further our mission and goals.

A Best Buddies Story - Jack Mayor

MTEAM: Have you met anyone through Best Buddies who really inspires you? Who and how so? 
JM: 
The person that I have met and formed a friendship with is Matt Sousa. He is the State Director for PA. We bonded immediately, he gets me, and I love that he jokes with me and makes me laugh. 

A Best Buddies Story - Jack Mayor

MTEAM: One of your goals is to educate the public about what it’s like to grow up and live with autism. For people who have never encountered anyone who has autism before, what would you most like them to know?
JM:
 I would like them to know that they need to have patience. Autism is really hard on me, and I oftentimes get overwhelmed and easily frustrated. Having someone who is patient with me, and all of my quirks, helps me out a lot. 

A Best Buddies Story - Jack Mayor

MTEAM: Do you have a favorite memory from your time with Best Buddies?
JM:
My favorite memory in my time with Best Buddies was the 2017 Miami Gala, because it was such a great honor to be able to speak in the headquarters of this outstanding organization. 

A Best Buddies Story - Jack Mayor

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?
JM: 
I would tell someone who is interested in supporting Best Buddies that if you care about making positive changes in special people’s lives, then Best Buddies is an organization that you should get involved with. I would also tell them that Best Buddies has a proven track record of taking their resources and making better lives for so many others. 

Candyce Carragher
Meet the MTeam: David Parada

Meet MTeamer David Parada who completed his first 100 mile cycle in the Best Buddies Challenge with the MTeam in 2018. He signed up the same day for next year!

 
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In our interview below, he also tells us the reason why supporting people with intellectual and developmental opportunities is important to him, talks about how he pushed himself to the finish line of the longest race he's ever cycled, and shares one of his favorite memories as an MTeamer.

David Parada - Meet the MTeam Interview
David Parada - Meet the MTeam Interview

MTEAM: When and why did you decide to join the MTeam?
DAVID PARADA: 
I actually joined the MTeam by chance. I was doing a training ride for the Best Buddies Challenge last year when I was introduced to John (MTeam’s captain). We got to talking and he asked me if I was part of a team. I explained it was my first time doing the Best Buddies Challenge, so I really didn't know anyone. He told me had one slot left open on the MTeam and asked if I wanted to join. He explained who Mer Bear was and that this team is for her and for awareness of FOXG1. I couldn’t be more happy that I agreed to become a part of this community.

David Parada - Meet the MTeam Interview

MTEAM: Why is the MTeam and the Best Buddies mission important to you?
DP:
 People with IDD are very close to my heart as I worked as a behavioral specialist for seven years, working closely with children and adults with special needs. The people I worked with became family and brought light into my life. The MTeam and Best Buddies mission aligns with my ideals and I do the ride for those ones that I love. I love how welcoming the team is and the friendships and connections I’ve made in just this short time.

David Parada - Meet the MTeam Interview
David Parada - Meet the MTeam Interview

MTEAM: What’s one thing you’ve learned from being part of the MTeam community?
DP:
 Prior to joining the MTeam, I was not aware of the rare condition FOXG1. Through this amazing community of the MTeam, I’ve learned so much about the syndrome and what a supportive community there is for people just like Mer Bear.

David Parada - Meet the MTeam Interview

MTEAM: What makes the MTeam special? What would inspire people to join you?
DP:
 I can’t say much about other teams as this is kind of the first fundraising team I’ve ever joined, but MTeam’s genuine dedication to help this cause, their love and support for one another and for Mer, and the welcoming attitude they have towards anyone interested in the team and Best Buddies Challenge is something very special and does not go unnoticed.

David Parada - Meet the MTeam Interview
David Parada - Meet the MTeam Interview

MTEAM: Did you walk, run or ride in the 2018 Best Buddies Challenge? What about 2019? Describe the atmosphere of the event for us!
DP:
 I completed the 100 mile cycling challenge and I signed up that same day to do it again in 2019. Honestly, it was very nerve-wracking as it was a challenge that I never thought was possible for me. I’ll never forget the feeling at the starting line that I was just about to embark on a six and a half hour bike ride when the longest I’ve ever done before was two hours. But the support I had along the way and the smiles on the Best Buddies' faces at the finish line made it all worth it!!

David Parada - Meet the MTeam Interview

MTEAM: Tell us about your training regime and how you prepare yourself for the physical challenge.
DP: 
Due to an ankle injury last year, I didn’t really have a strict training regime for this challenge. I cannot emphasize enough that it was mind over matter for me. I remember at one point, around mile 82, I just shut off my brain and turned into a machine to keep my legs going.

David Parada - Meet the MTeam Interview
David Parada - Meet the MTeam Interview

MTEAM: Mentally, what helps you reach the finish line and keep pushing yourself toward your goals?
DP: 
I kept thinking of the individuals in my life that may have not been able to complete this challenge due to physical or mental limitations and kept reminding myself that I am doing this for them. I did it for anyone and everyone that’s ever wanted to be able to do this type of challenge.

David Parada - Meet the MTeam Interview

MTEAM: How did you feel when you crossed the finish line last year?
DP:
 The last two miles by far were the hardest miles I have ever ridden. I didn’t think I was even going to make it to the finish line. But, turning that corner and seeing all the faces of friends and families cheering and supporting everyone was overwhelming. I was elated. The hug I received from the buddy who gave me the finisher’s medal was a moment I’ll never forget.

David Parada - Meet the MTeam Interview
David Parada - Meet the MTeam Interview

MTEAM: What’s your best piece of advice for MTeam newbies and one piece of advice for returning MTeamers?
DP:
 For new teammates, welcome to the family! We are here if you need anything. Just know we are with you every step of the way. For returning MTeamers, thank you for paving the way for this amazing growing team and for continuing to utilize the team as a means for outreach. All I can say is thank you, I admire you all, and I feel privileged to be a part of this team.

David Parada - Meet the MTeam Interview

MTEAM: Share an MTeam memory that has been the most powerful and inspiring for you so far.
DP: 
Our captain John let us know we had surpassed our original goal of $150,000 raised right before the start of the 100 mile ride. This was a giant morale boost and I knew right away that I had made the right decision to join this amazing team. I can’t wait for the future memories that we will be creating in 2019 and many years to come.

David Parada - Meet the MTeam Interview
Candyce Carragher
10 TED Talks on Health, Fitness & Wellness

Whether it harks back to the return to school season from our childhoods or it’s the refreshing release from the summer heat, September is a time that many of us take stock of our lives, look for ways to make changes and find fresh inspiration to do so. 

 
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TED Talks can be amazing motivators, so we’ve rounded up 10 of them that focus on health, fitness and wellness. Dive in:  

1. SHIMON SCHOCKEN: WHAT A BIKE RIDE CAN TEACH YOU. 

A computer science professor and avid mountain biker, Shimon Schocken spoke at TEDxTelAviv about the outdoor program he created to cycle with some of Israel’s juvenile inmates to share the life lessons he learned while riding. Great talk on how physical activity, nature and a challenge can affect our lives. 

2. JACQUELINE WAY: HOW TO BE HAPPY EVERY DAY - IT WILL CHANGE THE WORLD.

Founder of 365Give, a charity dedicated to educating, empowering, and inspiring children to change the world "one give, one day at a time,” Jacqueline Way promotes an idea at TEDxStanleyPark that we can all use to boost our happiness. It’s as simple as giving to others, she says - a theory that she tested by giving something away every day for a year. Research backs this up, showing that giving reduces stress and, indeed, makes us happy. 

3. EMILY BALCETIS: WHY SOME PEOPLE FIND EXERCISE HARDER THAN OTHERS.

Why is working out a chore for some people while others thrive on it? Social psychologist Emily Balcetis shares some research at TEDxNewYork that addresses this. She shows how our vision makes a difference and how to work with this knowledge to become someone who enjoys physical activity.

4. RUAIRI ROBERTS: FOOD FOR THOUGHT - HOW YOUR BELLY CONTROLS YOUR BRAIN.

At TEDxFulbrightSantaMonica, nutritionist, microbiologist and neuroscientist, Ruairi Robertson looks at the connection between our stomachs and brains and how what we eat can influence both our physical and mental health. He refers to our bellies as our “second brain” and discusses the ways in which we can use nutrition to fight and prevent disease. 

5. DAN BUETTNER: HOW TO LIVE TO BE 100+.

New York Times bestseller and National Geographic Fellow Dan Buettner debunks common myths about longevity at TEDxTC. He studied the world’s “Blue Zones” where “communities live with vim and vigor to record-setting age.” He shares nine diet and lifestyle habits that will push us to live our best and longest lives.

6. MATT CUTTS: TRY SOMETHING NEW FOR 30 DAYS.

Have something in mind that you’d like to do but keep putting off for one reason or another? At TED2011, Matt Cutts challenged his audience to set a goal and try that thing for just 30 days. It seems to be the right amount of time or create (bike to work?) or get rid of (stop eating sugar?) a habit. 

7. CHRISTOPHER MCDOUGALL: ARE WE BORN TO RUN? 

Why do people have a desire to run? At TEDxPennQuarter, Christopher McDougall explores the ties to our history (human survival) and shares the story of a marathon runner with a “heart of gold” and a tribe in Mexico that runs to live. Research has shown that running is a way to get all parts of the body working harmoniously to promote health.

8. DAN GILBERT: THE SURPRISING SCIENCE OF HAPPINESS. 

What makes us happy? It’s not always what we think it will be, says Harvard psychologist Dan Gilbert at TED2004. He talks about what will actually make us happier, supported by research, while promoting his book Stumbling on Happiness. We have what he calls a “psychological immune system”, a concept he explores on the stage. 

9. SCOTT GELLER: THE PSYCHOLOGY OF SELF MOTIVATION.

Alumni Distinguished Professor at Virginia Tech and Director of the Center for Applied Behavior Systems in the Department of Psychology, Scott Geller took to the stage at TEDxVirginiaTech to talk about how we can become self-motivated. He asks three questions that, if answered, can lead us to feel empowered to reach our goals. 

10. AMY MORIN: THE SECRET OF BECOMING MENTALLY STRONG. 

How do we build the mental strength needed for marathons, triathlons and cycling races? Licensed clinical psychologist Amy Morin spoke on the 3 basic factors of mental strength - regulating our thoughts, managing our emotions, and behaving productively despite our circumstances - at TEDxOcala. 

Candyce Carragher
10 Minutes with: Amanda Schuster (@TheYamQueen)

Meet Amanda Schuster. We've been following her sweet baby girl Emmy on Instagram for a while now. We just love her updates and seeing the way brave little Emmy is growing and changing over time.

 
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Below, Amanda shares some stories of her life with Emmy who was born with a very rare genetic condition called Pfeiffer Syndrome, and the rest of her family including her husband and Emmy's big bro Baron who she absolutely adores, She also tells us how Pfeiffer Syndrome manifests itself and what we can do to make the world a more inclusive place for Emmy.

Amanda and Emmy - Pfeiffer Syndrome Awareness

 MTEAM: Tell us a bit about yourself and your family.
AMANDA SCHUSTER: 
I’m Amanda. We currently live in the Seattle area, but both my husband and I grew up in Kentucky. We have two cool kids, a hairless dog, and a hairless cat. We both work full time. My job is pretty boring phone work for a doctor’s office (sorry, doc!) but I get to do it from home. My husband is a game designer with Wizards of the Coast.

Amanda and Emmy - Pfeiffer Syndrome Awareness

MTEAM: Your daughter Emmy was born with Pfeiffer Syndrome. How common is it? Can you explain a bit about what it is exactly and how it manifests itself?
AS: 
Pfeiffer Syndrome is very rare. It’s about a 1 in 100,000 birth syndrome. Emmy has a special twist of Pfeiffer Syndrome that is about 1 in 250,000 births. 

Pfeiffer Syndrome is a mutation on the FGFR2 gene which doesn’t mean much to me. It’s not hereditary unless you have Pfeiffer Syndrome and then it’s a 50/50 chance that you will pass it on. Neither of us have Pfeiffer Syndrome, so it was just a spontaneous genetic mutation and nothing we did or didn’t do made it happen.

The basics of Pfeiffer Syndrome is that the skull begins to fuse early on in development. Babies have “soft spots” where the skull hasn’t fused together so the skull can expand and the brain can grow. Emmy’s skull fused before birth. That causes pressure on the brain and the shape causes her eyes to look bulging. It also can cause hearing loss. Her midface is squished which causes breathing and eating trouble, so she has a tracheostomy and a feeding tube until a surgery will (hopefully) change that. There are other things that Pfeiffer brings - wide thumbs and toes, tracheal sleeve, fused joints - all of which Emmy has.

Amanda and Emmy - Pfeiffer Syndrome Awareness

MTEAM: Tell us a bit more about Emmy! How old is she? What does she love most? What makes her happy? What makes her uniquely Emmy??
AS: 
Emmy just turned a year old! She’s been through a lot in her first year to get her medically stable and now she gets to do some developing. She’s a little delayed but is learning and growing and we don’t have any reason to believe that she won’t catch up developmentally.

She loves her brother most of all. She thinks he’s just the greatest. She loves kisses, tickles, and her Oball. She has really learned to love wearing her BAHA hearing aid and making loud kiss noises while giving her kisses on her head make her laugh so much!

Amanda and Emmy - Pfeiffer Syndrome Awareness

MTEAM: What’s a typical day in Emmy’s life like?
AS: 
Honestly, pretty boring considering all that she’s got going on. It’s pretty typical things just done in non-typical ways. She’s fed by feeding tube at normal meal times. While I work, she hangs out with her amazing nurses downstairs and they play together and she fights naps, just like a typical kid. She does have to have her trach area cleaned every night, which is fairly unusual for most kids and she hates it because it means less play time.

Amanda and Emmy - Pfeiffer Syndrome Awareness

MTEAM: Emmy has a special relationship with her big brother Baron. They clearly adore each other! What does he love to do with her most? Do you have any advice for other parents on how to explain a diagnosis like Pfeiffer Syndrome to a big sibling?
AS:
 He has really risen to the task of big brother. He loves to do things to help out with her care. He really loves watching Yo Gabba Gabba with her and tickling her. 

Baron has always been a really bright, inquisitive kid. For us, we approached Emmy’s differences very directly. We explained what she would likely look like, what she may need to help her grow, and that she would likely have many surgeries in her life. We introduced him to other kids with Pfeiffer Syndrome online. When he got the opportunity to meet some kids close to his age with Pfeiffer Syndrome, I’m super proud to say that he just treated them like any other kids he wanted to play with.

Amanda and Emmy - Pfeiffer Syndrome Awareness

MTEAM: What have been some of your biggest challenges and the best rewards along your journey with Emmy so far?
AS: 
There have been a lot of challenges. It’s been difficult trying to adjust to what “normal” is for Emmy. She doesn’t meet milestones like an average baby and she has so many medical needs. The biggest challenge for me, truly, has been letting go of what “normal” means and letting Emmy lead.

The best rewards are always her smiles. Seeing her happiness after all of the medical interventions it took to get her growing and stable is so incredible.

Amanda and Emmy - Pfeiffer Syndrome Awareness

MTEAM: What advice would you offer to other parents who are just finding out about a Pfeiffer syndrome diagnosis? What about some advice to the parents of other children who take notice of Emmy’s physical differences?
AS: 
The best advice I could possibly give another parent getting this diagnosis is to just let the child lead. Find a good team of doctors that will help you advocate and be proactive. Give up on what is “normal”. Scratch that from your vocabulary. These kids are extraordinary.

My biggest wish for people who meet Emmy is for them to know that it’s okay to look at her. Don’t turn your head or rush your kid away because you are embarrassed of them staring. She looks different and it’s highly unlikely that she will ever not look different. Introduce yourself and your child. Ask questions. Meet Emmy. See her. 

When she’s older, ask her to play. 

Amanda and Emmy - Pfeiffer Syndrome Awareness

MTEAM: What key changes would make this a more inclusive world for children with Pfeiffer Syndrome?
AS: 
Our kids have varying mobility issues that would obviously be helped with accessibility, but the biggest thing is being inclusive. A lot of our kids look different but are cognitively very typical. Include them and teach your kids that they are just kids who want to do the same things as they do.

Amanda and Emmy - Pfeiffer Syndrome Awareness

MTEAM: Emmy has a very active and supportive following on social media. How has this been important throughout her journey? How can other parents with children who have disabilities leverage social media to advocate for their kids the same way you’ve been able to for Emmy?
AS: 
Man, #TeamEmmy is a force. When we have a surgery or issue come up, we have an army behind us sending her prayers, positive energy, good thoughts, whatever. When she has a milestone met, she has thousands of cheerleaders. Both of those things are so powerful.

The other thing that is so important is just education— teaching the world about Emmy will hopefully lead to her being included more in the world.

Amanda and Emmy - Pfeiffer Syndrome Awareness

MTEAM: What’s one thing you’d like the world to know about Emmy or about Pfeiffer Syndrome?
AS: 
Emmy is pretty great. She’s not a typical baby but she’s really amazing. Her smile lights up a room and her.

Amanda and Emmy - Pfeiffer Syndrome Awareness

Candyce Carragher