Community News

Top 10 Reasons to Attend the Meeting for Adults with FA

May 22nd, 2019

​1. Find your people

“I went from knowing one person with FA to knowing over 40! They know exactly what it’s like to have a dozen different doctors and some kind of test every month or so. They know what it’s like to balance living in the moment while worrying about possible illness in the future.”


2. Share your story

“It’s an incredible experience to feel like we all belong and to be able to share our stories with other patients, doctors, and researchers. It’s that undeniable sense of belonging to a family that just ‘gets it’.”

Sean Sean Breininger and Mary-Beth Johnson share their stories at the opening session of the Symposium

​3. Be a part of a community

“My reason for attending these meetings is simple: the pure joy that comes from seeing all these wonderful people come together, united, as a community, by the single thing we share, rather than separated by any differences. We can all put aside our personal hardships and struggles to enjoy the pleasure of a friend’s company. I am always glad to meet everyone there, as they inspire me to involve myself in these battles we wage individually and, at the same time, as one.”

Adultsandcommunity Adults with FA, friends, FA parents

4. Get support

“I was a little overwhelmed in the support groups initially. However, the more that I interacted with other adults with FA, the more I realized that I needed to be here and that I have support from others who know what I feel and am going through.”

support group After a support group at the meeting

​5. Talk to the experts

“I don’t have any FA specialists where I live, so attending this meeting, hearing from the experts, and getting their advice is invaluable to me. I take what I learn back to my own doctors, and I feel empowered to direct my medical care.”

Blanche The meeting for adults takes place the same weekend as the Scientific Symposium, and in the same hotel, allowing for attendees from both meetings to spend time with each other.

6. Hear the latest research

“Having the Adult Meeting combined with the Scientific Symposium is such a great idea. Even though the Symposium sessions can be hard to understand, it is inspiring to see so many scientists working on this disease, and hearing the things they’re working on gives us hope for the future.”


7. Spend time with researchers

“We sat with researchers from Spain at dinner one night, and their passion for our little disease gave me so much hope! It made me a little bolder in my dreaming of a long life. It made me SO thankful that they have persisted, sacrificed, and pushed through failure, to bring us closer to long-term solutions.”


8. Meet in real life

“I’m thankful that we have such a supportive community, spread all across the world. It’s so exciting to come together and meet people in person, whom you’ve encouraged or supported online, or who have encouraged and supported you. For me, the meeting is about unity. I love hearing about and acknowledging other patients’ unique experiences and realizing we’re all individuals and resilient, while having so many of the same troubles and fears. We are both united and unique.”


9. Those nights by the pool

“I will forever be indebted to the adults with FA. For creating a community of generosity and hope. For sharing the pit of feelings. And for finding the resilience to climb out of the pit, with arms reaching down to pull others up, and sit around a pool late into the night sharing life and laughs.”


10. Have fun

“My personal favorite thing about the FAdult meeting is hearing other people’s stories and being there to support them and receive support from individuals like me. I enjoy the late nights, the long conversations, the self-planned outings and the small groups that just seem to form. I think they are lot of fun, and look forward to going back year after year.”

Elevator How many FAdults can fit inside the elevator?