The Friedreich’s Ataxia (FA) community recently had the unfortunate news about the Horizon Interferon Gamma Trial ending in failure. A fellow FA patient wrote about the impact. You can read her post here: https://fafysio.wordpress.com/2016/12/12/when-significant-isnt-significant/
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 FA you know how devastating it is. When I was diagnosed I remember reading a blog saying that FA 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 FA. 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 FA.
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 FA. 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.