Rare Disease Day is the Friedreich’s ataxia (FA) community’s window of opportunity to educate society about the disease, correct misconceptions about it, and describe needed resources and support. To boost this important work, FA patient advocates share what’s helpful for awareness campaigns and what they hope the public learns about their disease through those efforts.

[Title slide: What has been most effective in your community’s awareness efforts, and how can that success be built upon?]

Sean Baumstark: You know, this may be an unfair response because I am somewhat close to the effort, but I believe RideAtaxia has changed the game for the FA world, whether that’s because of FARA or because of “The Ataxian” film or, you know, because of the fundraisers across the globe where people have gone on a bike and raised money. I believe that one vehicle, if you will, has been the most successful. And additionally, I think a lot of people find ways to do what they can, which I think is powerful. You know, I think of a family right now, the Garres, they are really good at music and musical theater and orchestra, and they have found ways to utilize what they’re good at to fundraise for research into treatments and cures for FA. So beyond RideAtaxia, what I believe has been really powerful is people finding their own area of strength and utilizing what they can do to bring awareness and funding for this condition.

AJ Perez: I do work in the schools, so I put up posters that have the barcodes that you can scan and it pulls up a bunch of FA information, because not only is it important for me and my colleagues to have that awareness, but anybody working in the school or just for even the parents’ sake of wondering who that guy is that, you know, looks and sounds drunk, providing a safe answer for them. They want to know. And I actually wanted to start doing a business about a year ago where I have different events, I let people tell their stories, I have games based on FA, food and music just to help bring that awareness to not only my community, but others as well.

[Title slide: What do you wish the public knew or understood about Friedreich’s ataxia?]

Jean Walsh: I’m sure this is true with any rare disease, but you just get worn out and tired of explaining your disease to people. But if you don’t explain it, then how are people going to know? It’s kind of a double-edged sword. So my life would be so much easier if I didn’t have to explain. And if people just accepted the fact that having a disease is not abnormal. Disease and disability are part of the human condition. So a rare disease is not abnormal, because 1 in 10 people have them.

Morgan Talevich: If there were more awareness of [FA], then doctors would know how to treat you and what to stay away from and what you would need to continue to get better.