The ATAXIAN

While in Washington DC for Rare Disease Week we got the chance to meet Kyle Bryant and his friends from the Friedreich’s Ataxia Research Alliance (FARA).  Like cystinosis Friedreich’s Ataxia (FA) is a rare and incurable disease.  Kyle and his friend Sean Baumstark did the Ride Across America bike ride to raise funds and awareness for FA, all of which was documented in their amazing movie The Ataxian.  If you haven’t seen it, I totally recommend it!  Also, the cool thing is that Dr. Cherqui, the brilliant researcher working on the cure for cystinosis, has been able to use the same technique in her stem cell studies for both cystinosis and FA!  This is just another example of how donations to CRF benefit other diseases, both rare and common!