Showing 1–12 of 742 results for ''

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.

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!"

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.”

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.

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."

Shandra has served as an ambassador since 2018 and dedicates her time to help others in the community feel less alone. Shandra earned her PhD in Genetics in 2024. 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!”

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.

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.".

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."

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”.

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.

Christina has served as an ambassador since 2013, and was apart of the original leadership team! She dedicates her time to keep the legacy and mission of FAmily member, Matt DiIorio, which is to help others with FA experience the benefits of the FARA community. Christina loves attending live concerts, Buffalo Bills games and going on strolls in the park on her Catrike with her husband, Justin, and their puggle, Max. She works full-time in the hotel industry as well. Her favorite FARA event was her annual 5K Mother's Day Race for Christina, but now her family's focus is having Team Christina - The Purple Caped Crusaders at rideATAXIA Philly. Christina would tell someone newly diagnosed “do what you can while you can”.