If you want to meet a rockstar in the Friedreich’s ataxia community (and in general), you have to go to Ride Ataxia and meet Kyle Bryant. He lives with FA and his on a mission to find a cure, and gets closer every year! He has the brightest spirit of anyone you will ever meet.
Here’s my post from phl17.com:
According to the Friedreich’s Ataxia Research Alliance, “Friedreich’s ataxia (FA) is a debilitating, life-shortening, degenerative neuro-muscular disorder. About one in 50,000 people in the United States have Friedreich’s ataxia.” There are currently no cures or treatments for FA, but certain symptoms of the disease can be treated as they appear. The Friedreich’s Ataxia Research Alliance also states that some symptoms include:
- loss of coordination (ataxia) in the arms and legs
- fatigue – energy deprivation and muscle loss
- vision impairment, hearing loss, and slurred speech
- aggressive scoliosis (curvature of the spine)
- diabetes mellitus (insulin – dependent, in most cases)
- serious heart conditions, including hypertrophic cardiomyopathy and arrthymias
But RideATAXIA is paving the way for scientists and doctors to find a cure. The event – which was started by the Bryant family when their son, Kyle, was diagnosed with FA in 2007 – is a bike ride for all ages and abilities to raise awareness and funding for research. This year, RideATAXIA Philly (which takes place at Montgomery County Community College) broke records with the amount of money raised. They blew past their goal of $250,000 – and as of today have raised over $316,000.
The event would not have been as successful without the support of their sponsors, specifically Outback Steakhouse, Carrabba’s Italian Grill and Bonefish Grill – who cater the event every year.
To donate and help cure FA, head to RideATAXIA.com/Philly.