AJ Perez, 36, from Austin, Texas, was diagnosed with Friedreich’s ataxia (FA) in March 2020. He discusses what he sees as being more realistic in terms of what could be achieved through boosting awareness about FA.

The only reason I think it’s important for others to know about ataxia is to help in the medical sense, to develop medicines for children and for others going through [Friedreich’s ataxia].

People judge you no matter what, and that is just something I grew up to really not care about — what other people thought of me. And the FA increases people’s judgments, whether good or not. That’s not really a big thing to me, personally.

I think helping individuals deal with what they’re going through is a lot more important than trying to make the others who might not even care aware.