Still very much on the go.
Since introducing Sydni Gibson-Dupre to the Cure FA Soirée community two years ago, she has proven that she will not let Friedreich’s Ataxia (FA) slow her down. This past year, has been full of big moments for Sydni. She and her husband, Tony, moved back to Louisiana to be closer to family and recently celebrated their third wedding anniversary.
Next month, Sydni will be celebrating her 26th birthday, and soon after, she and her brother Sam, who also has FA, will take part in rideAtAXIA Hometown Lake Charles on April 11, 2026. Together, they will ride to raise both funds for FA research and awareness for this disease that affects their family so deeply.
You can be part of their support team by visiting FARA’s rideATAXIA page and making a donation in support of Sydni and Sam Dupre’s team.
Sam Dupre with his sister, Sydni Gibson-Dupre
A Life Dedicated to Research and Hope
Sydni shared the following about her journey with clinical trials:
“I was diagnosed with FA in 2010 at 10 years old and have been participating in FA clinical studies and research trials since 2013, when I was 13 years old. I have participated in over 15 clinical studies/trials over the past 13 years (and screened for even more) and have traveled all over the country.
I live in Louisiana, but I have traveled to many clinical sites in Minnesota, New York, New Jersey, and Florida, with my family. I'm currently in three different ongoing trials and studies.
My family has also participated in or are currently still participating in clinical studies; my mother, father, and biological sister are all carriers of FA and have traveled to be part of studies, and my older brother, who also has FA, has been in a few trials and studies as well.”
Advocacy, Connection, and Community
In between these milestones, Sydni continues to pour her energy into serving the FA community. She remains a FARA Ambassador and co-leads FA Hangouts, bi-monthly social video calls for adults (age 18+) with FA, alongside Michael Gehr, co-founder of the Cure FA Soirée.
Sydni is also a disability lifestyle content creator & influencer which she runs as her business. Through her platforms, she shares what life with FA really looks like, both the challenges and the victories.
On top of all that, Sydni regularly travels to participate in clinical trials, a commitment she has made for most of her life.
A Mother’s Perspective on Strength
Sydni (center) with her sister Courtney and mother Katie
In a 2018 Facebook post, Sydni’s mother reflected on her daughter:s strength and character:
“SHE IS truly clothed in dignity in strength! She surprised us all when she walked across that stage to get her diploma! I cried uncontrollably! To know she planned that for us, shows so much of her character! So very proud of this 3.96 Honor Graduate! She earned Honor TOPS, the John McNeese Scholarship, and the Louisiana Pigment Scholarship. She took AP classes, College courses, and maintained Banner Roll. If that’s not enough to be proud of, I’ll add that she did all that while slowly losing her ability to walk, write, and be a normal teenager. She watched her former friends walk and laugh through the halls of school all the while not giving her a second look. She never got the chance to ride around town with friends, go to Casa with a group of girls, or even go to the movies with friends. Her high school fun consisted of traveling across the US participating in Medical Research and numerous Drug Trials in hopes of finding a treatment or cure for Friedreich’s Ataxia knowing that it will probably not happen in her lifetime. She had to work double hard to make-up the work she missed when we were gone. I truly thank the ones that have been there for her throughout it all. She is an extraordinary one-of-kind person. She is very accepting of others , and she can drive you insane at times, but there will never be another B! She always has a smile on her face. YOU are a hero to many who love you! Thank you to our friends and family who have been their for us and for Sydni! Love you B!”
Turning Determination into Hope
Sydni’s life is a powerful reminder of why we gather, plan, and show up for events like the Cure FA Soirée. Every mile she rides, every trial she participates in, and every space she creates for others living with FA pushes this community forward. By supporting Sydni, Sam, and the FA families like theirs, you are helping turn determination into discovery and hope into action. We hope you’ll join us at the 2026 Cure FA Soirée and other upcoming events as we continue working together toward treatments and a cure.
