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How do I get involved in the Charcot-Marie-Tooth Association’s (CMTA) Youth Council? How can I help empower the youth? What can I do to make a difference? If you have ever asked yourself these questions, you have come to the right place! We can’t wait to work with you and together empower the youth living with CMT. Sign up now and get involved in CMTA’s Youth Council by helping us complete the projects we are currently working on. Check out our membership requirements by visiting Youth Council Membership Requirements
Hannah graduated from Kent State University in 2017 with a Bachelor’s degree in business management and marketing. After graduation, she joined Northern Trust, a Wealth Management bank, as the Cleveland sales associate and marketing coordinator, where she is responsible for the coordination and execution of all marketing efforts, including events, as well as new business generation and sales processes. Outside of work, Hannah enjoys the great outdoors (hiking, biking, kayaking), cooking, watching documentaries, travelling to new places, and the theater. She love sunsets/sunrises, a good veggie burger with fries, the mountains, all things CLEVELAND, baseball, her dog Fitz and, above all, spending time with my family and friends.
The fundraising committee organizes projects that aim to engage youth to raise money for CMTA. We have a fundraising outline that helps to guide youth when coming up with their own projects. Additionally, we run yearly Projects such as Social Media Bingo, Piggy Banks, and the Dance4CMT. Our work is designed to raise money for research and support the mission of CMTA.
The Special Projects committee aims to educate and engage the community through our events and largescale projects. We enlist the experiences, feedback and talents of our youth to better serve the youth community. Our goal is to develop fun and amazing new projects to build our community even stronger!
Toby
Toby lives in Calgary, Alberta and attends Western High School as a sophomore. At age 8, he was diagnosed with CMT1A and has attended Camp Footprint for 4 years. He is super excited about serving the youth council on the special projects committee. For fun, Toby enjoys editing movies, anything involving computers such as programming and studying hardware design, and woodworking.
Joseph has CMTX. He got involved with CMTA through Camp Footprint in Pennsylvania. He was recommended to CMTA by his friend, Toby, who he met at Camp Footprint. He hopes he can bring more ideas and a positive mind to CMTA. He has always wanted to be a better leader and to make a good impact on the world. He believes he can accomplish these goals while helping CMTA to be a better organization. He serves on the Special Projects Committee.
Hannah is fifteen years old and resides in Springfield, New Jersey. Hannah is diagnosed with CMT1A and got involved with CMTA after attending Camp Footprint, which she states was “a great experience.” She hopes to be able to change CMT lives across the world while being a part of the Youth Movement.
Beka lives in Southern California and has CMT1A, which she inherited from her mother. She joined the CMTA Youth Council after learning about it from other members. As part of the Special Projects committee, she aims to make a lasting impact by creating fun and engaging new projects that strengthen the CMT community!
The social media committee is a passionate group of youth using the power of social media in the youth community. Our committee uses social media to spread the word on events, highlight wonderful youth and their accomplishments, and cultivate an empowering connection of youth from all around the world. Please take a moment to support our posts and projects by following us on Instagram, at @cmtayouth, and like our Facebook Page at www.facebook.com/CMTAYouth
Lily
Lily lives just South of Charlotte, NC. She was diagnosed with CMT1E and HNPP at 4 years old. She joined CMTA’s Youth Council after getting to know the leadership and some of the members at Camp Footprint. Lily immediately knew she wanted to make her mark and aims to empower youth living with CMT to live their lives to the fullest. She works on the Social Media committee.
Shelbi was diagnosed with CMT1E when she was 12 years old. A few years later, she found out about Camp Footprint, and now she’s been going for 3 years. Recently, she’s found joy in advocating not only for herself but for others similar to her, which is why she joined the Youth Council. Some things she enjoys are archery, designing architecture, voice acting, rocking out to loud music and going to concerts, and cooking (Especially eating the food).
Amanda currently resides in Des Moines, Iowa, where she attends the local college as a freshman. She was diagnosed with CMT4C at 9 years old, along with her two sisters. Now at 18 years old, Amanda joined the Social Media committee of the Youth Council, with a special focus on fundraising. She has been attending Camp Footprint since 2018.
Sebastian is from Ontario, Canada, where he attends a local college for computer programming. He was diagnosed with CMT1A at 12 years old, along with his twin sister, which was inherited from their dad. He became involved with CMTA’s Youth community in 2019 at Camp Footprint, and joined the Youth Council in 2022, where he continues to serve on the Social Media Committee. His goal is to educate more people about CMT and help youth get involved with the community.
Brooklyn is from a small town in southeast Minnesota. She has CMT2A. A lot of her day is spent being active, specifically playing volleyball, which she has found to love. She’s super excited to be on the CMTA youth council, and make all her dreams come true and become reality!
The purpose of the engagement committee is to craft unique and diverse ways to connect the youth community living with CMT. Our mission is to welcome new members to the youth movement while driving deeper engagement with past and present friends!
Alana
Alana is from White Bear Lake, Minnesota. She has CMT4A, and she is the only one in her family that has it. She was able to join the youth council because of her dedication to fundraising and the meaningful relationships she has formed at Camp Footprint. Being a part of the youth council is a wonderful opportunity; it empowers youth to get involved and forge valuable connections. She is passionate about her role on the youth council because of the positive change and inspiration it exemplifies for youth everywhere.
Cody, 17 years old, was born in a little town in Minnesota. He has CMT2A, and he’s always staying busy with school and friends. He’s happy to be on the youth council so he can help advocate for change in the CMT community.
Em has CMT1B. She found out about CMTA through Camp Footprint in 2016, and has been a part of the community ever since. She wants to be someone that other youth with CMT can look up to. “I love this community so much and I love meeting other people that have CMT, which is why I’m on the Engagement Committee!” says Em.
Henry lives in Charlottesville, Virginia and was diagnosed with CMT1X in 2019, a discovery that also led to diagnoses of several family members. In 2024, he attended Camp Footprint for the first time, where he formed meaningful connections within the CMT community. As a member of the Youth Council, Henry is dedicated to strengthening the youth network and developing innovative ways to engage and support members.
