Sean Baumstark, of Sacramento, California, was diagnosed with Friedreich’s ataxia (FA) in 2007 at 25 years old. He describes the FA challenge that most urgently needs solutions.

I would have to say the pressing issues have to do with the timeframe we have.

You know, this disease is fatal, like many rare diseases, and we’ve got to work hard and we’ve got to work fast if we’re going to improve the quality of life for everybody with FA and beyond.

The heart conditions and the spinal issues are at the root of what we need to fix and address in order to sustain life.