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Ambassador
Kyle Bryant
Kyle Bryant has served as a FARA ambassador since 2012 and dedicates his time to connect with others and advance FARA's mission. Kyle loves to be on the bike trail on his recumbent trike. He also spends much of his free time as the Cohost of the Two Disabled Dudes Podcast. His favorite FARA event is rideATAXIA. Kyle would tell someone newly diagnosed to meet others who have FA.
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Ambassador
Dillon Loomis-Head
Dillon has served as a FARA ambassador since 2016 or 2017 and has dedicated his time to helping the community feel like they are never alone, even though at times one’s diagnosis journey may seem grim and lonely. He also strives to help advocate for FA, whether that be by creating awareness in society or leading the FA Hangouts team.
Dillon has a wonderful passion for many aspects of creativity, including writing, music, books, photography, social media branding, fashion, acting, theatre, TV and Film. Dillon’s FA journey began at 15 with a few noticeable changes/symptoms. However he was not clinically diagnosed until he was 17; Senior Year of High School. Dillon is currently the only person in his immediate/extended family with FA. His favorite FARA Grassroots Event was FA Woodstock, which came to an end in 2022. FA Woodstock was an event hosted by the Hook Family, from Indiana. That event was helped him find his voice and sense of belonging in the community. He is forever grateful to The Hooks for creating such a special experience for the FA community and lifting them up.
Dillon would like to tell someone newly diagnosed: “Firstly, Breathe. This journey is going to surprise you on a lot of different levels. It is absolutely fine not to have all the answers. Your diagnosis journey is something that will take time to process. Take as long as you need and know that figuring out the way that works for you is just as important. FA is a very disappointing diagnosis to deal with but, please remember there is a community that understands similar feelings and we will listen. None of us have the “ideal” journey. All you or we can do is our best.”
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Ambassador
Madelyn Frederick Raynsford
Madelyn has served as a FARA ambassador since 2018 and dedicates her time to being someone that her teenage self needed. Madelyn is the leader of the FARA teen hangouts team and devotes her time as a member of the Ambassador Program leadership team. She enjoys staying active in the pool and walking with her life glider. Her Christian faith plays a huge role in how she advocates for FA and shares her journey across social media platforms including Instagram and Youtube! Her favorite FARA event is the rideATAXIA Dallas. Madelyn would tell someone newly diagnosed “Fists up, keep fighting the good fight! You may have FA but it doesn't have you! God does!"
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Ambassador
Matt Lafleur
Matt has served as a FARA ambassador since 2017 and dedicates his time to show the world that the FA community is strong, capable, and resilient, as we journey toward a cure. Matt became an employee at Friedreich's Ataxia News at a time when he believed he couldn't do much as a victim of FA. Now he knows that victimhood is just a mindset and hopes to empower all those in the FA community. His favorite FARA event is rideATAXIA, his first taste of empowerment as an FA patient. Matt would tell someone newly diagnosed “Even though you don't feel that you are strong enough to handle this diagnosis, you are. Years from now, you will see that you are stronger than you thought.”
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Ambassador
Mary Nadon Scott
Mary has served as a FARA ambassador since 2015 and dedicates her time to being an advocate and helping others in the community feel less alone. Mary is a very proud mom of four wonderful kiddos. Her favorite FARA event is the FARA/CHOP Symposium. Mary would tell someone newly diagnosed that even though things may seem and feel hard at times, know that you are not alone. It's ok to fall down or fall apart; but take a deep breath and keep going, and live your dream.
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Ambassador
Brittany Sommerfield
Brittany has served as a FARA ambassador since 2017 and dedicates her time to helping the FAmily. She also loves volunteering at her local conservancy and spending time with her 3 nephews, family, and friends. Brittany has a few odd jobs but enjoys being able to have time to participate in different trials/studies and travel for events. Her favorite FARA event is the annual FARA/CHOP symposium held in PA. Brittany would tell someone newly diagnosed, "I won't lie, it's gonna be hard. But remember you're strong, and keep moving, even if it's only step by step. I promise you'll find some good."
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Ambassador
Shandra Trantham
Shandra has served as an ambassador since 2018 and dedicates her time to help others in the community feel less alone. Shandra is currently a graduate student in Genetics at the University of Florida, where she is studying gene therapy. She loves to play Pokémon, spend time with her service dog, Abbey, and ride her Catrike in nature. She also loves traveling and adventure! Her favorite FARA event is rideATAXIA Gainesville. Shandra would tell someone newly diagnosed, “Life is so much better with friends, and this community is full of them!”
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Ambassador
Joe Tyler
Joe has served as a FARA ambassador since 2020 and dedicates his time to growing awareness around FA and has a passion for increasing participation in rare disease clinical trials. Joe's day job is with a global language service provider. He loves traveling with his wife, sailing and watching Indycar! Joe's favorite FARA event is the CureFA Soiree. Joe would tell someone newly diagnosed that you're not dead yet, so go out and push your body to it's limits.
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Ambassador
Erin O’Neil
Erin O'Neil has served as a FARA ambassador since 2012 and was a founding member. She dedicates her time to FARA to be a positive role model to the future generations. She loves to read, travel with her husband, and spend time with her large family. Erin's favorite FARA event is her annual Fuzzy Buzzy Golf Tournament. Erin would tell someone newly diagnosed, “Life is not over, you can still do it all, just a little differently.".
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Ambassador
Kelly Barendt
Kelly Barendt has served as a FARA ambassador since 2024 and dedicates her time to rare disease advocacy and helping others navigate life with FA. Kelly loves to go on long walks with her dog, Jasper, create content for social media, and spend time with her family and friends. Her favorite event is the symposium hosted by FARA & CHOP. Kelly would tell someone newly diagnosed "you can be literally whoever you want to be, you'll just move differently than others. Don't put yourself in a box."
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Ambassador
Aly Bourbeau
Aly has served as a FARA ambassador since 2024 and dedicates her time to raise awareness and understanding about FA. Aly is a big music enthusiast and loves to go to as many concerts as she can with her friends. Her favorite FARA event is the FA Symposiums. Aly would tell someone newly diagnosed “Live in the moment and don’t let your diagnosis stop you from living your best life”.
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Ambassador
Sam Bridgman
Sam has served as a FARA ambassador since 2016 and loves sports. Go Seahawks/Kraken/Mariners! He went to undergrad at University of Portland and got his MBA/masters in sports and entertainment management and currently works for the Seattle Kraken. He loves to Handcycle, spend time with friends/family, and watch TV shows/movies. His favorite FARA event is the Energy Ball. Sam would tell someone newly diagnosed to keep moving forward every single second of every single day.
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