Last year, we had the pleasure to introduce you to Kyle Bryant, the National Spokesperson for the Friedreich’s Ataxia Research Alliance (FARA) – a nonprofit organization dedicated to funding and facilitating research leading to treatments and a cure for Friedreich’s ataxia (FA) - and shared Kyle’s inspiring story.
Victory is proud to support the now 5th Annual Ride Ataxia Philadelphia. Recently, we had the opportunity to catch up with Kyle to chat about this year’s ride, and again, he amazed us. This time, it was with stories of hope and the groundbreaking research developments being made everyday, thanks to the generosity and perseverance of those working tirelessly to find a cure.
As a follow up, Kyle shared his excitement and thoughts on the event, the foundation’s research, and the big impact that even small Victories make in the fight to end this devastating disease. Here it is, again in his own, inspiring words.
By Kyle Bryant
We are very excited to partner with Victory once again to bring you the 5th Annual Ride Ataxia Philadelphia! Much the same as the exciting Victory expansion in Parkesburg, this year our venue will change to Montgomery County Community College which will allow huge room for growth and for the first time, we will be able to serve Victory beer after the ride!
Ride Ataxia is off to a huge start this year with over 1,000 participants and $225,000 raised for research so far. We are having a lot of fun and riding lots of miles but it all comes back to the search for treatments and a cure for Friedreich’s ataxia (FA). FA is a debilitating multi-system disease and the most common cause of inherited ataxia; 1 in 100 people are carriers of the FA gene. What begins as difficulty with balance and coordination, progresses over a short period of time to a life altering loss of mobility, energy, speech and hearing, robbing children and young adults of the ability to live active lives. Through the Ride Ataxia Program we are making great strides toward the goal of treatments and a cure. Since its inception, the Ride Ataxia Program has raised $2 million for research.
FARA has many approaches to solving the problem of FA which is caused by a repeat in the DNA resulting in a reduced production of a protein called Frataxin. Some of FARA’s approaches include, helping the body produce more Frataxin, stabilizing and enhancing the Frataxin that is already there so less is needed, delivering synthetic Frataxin, and decreasing the damage caused by the lack of Frataxin. We know that some of the approaches will fail – that’s just the way it goes – that’s why FARA has several projects within each approach. And it’s working.
In fact as I write this I am sitting here with an IV im my arm at the Clinical and Translational Research department at Children’s Hospital of Philadelphia (CHOP) participating in the clinical trial for one of our approaches called EPI-743. I am 3 months in to a 1 year trial after which the data will tell us if we’ve got something. And we have plenty of other potential treatments lined up behind this one. We will keep riding until we cross the finish line.
So come join us on October 13 as we ride closer and closer to Victory–treatments and a cure for FA.