In 2016 the Friedreich’s Ataxia (F A) community recently had the unfortunate news about the Horizon Interferon Gamma Trial ending in failure. A fellow FA patient wrote about the impact. It’s an interesting read, including the most significant, honest and relatable thing I’ve ever read about FA:
“We are all waiting for the cure and every day we are one step closer. If you have F A you know how devastating it is. When I was diagnosed I remember reading a blog saying that F A is like having your body set on self destruction mode. Imagine the red warning lamp constantly blinking and the alarm sounding: Warning! Countdown for self destruction initiated. That would be every second, every minute, every day. Your body is slowly being destroyed.
I have the late onset version of F A. I grew up healthy and had my youth, student years and many more years to follow with no worries, lots of sports, parties and fun. I know the difference between a healthy body and a body with FA. Wow. Having a progressive, degenerative disease can be a very daunting sentence, in every way imaginable (physically, mentally, spiritually, etc.) I thank God for my friends and family who help that alarm become background noise as I continue forward in hopes of finding a cure for F A. Let’s all take a moment to mentally thank all of the participants and researchers in that trial, and fiercely pray for the remaining and forthcoming trials. We can do this, team, we can cure F A. Don’t count this small defeat as THE great defeat. We can learn from this trial and make the next one THAT MUCH better. Keep up the good fight, friends.