FA has its first FDA approved treatment, and it came on Rare Disease Day, Feb. 28. The drug is called Skyclarys, and its main purpose is to help slow the progression of FA symptoms.

And it just so happens that this drug is one that I’ve already been taking since I started the open label phase of my clinical trial in 2019. I was diagnosed in 2018 and began the trial at the University of Florida that summer, just a few short months after my diagnosis was confirmed in April.

This is a huge blessing. The first drug I ever took to treat FA turned out to be the first one proven effective in treating FA! This is so awesome, and it’s a huge step in our cause towards curing FA. I am so excited and hopeful that it can slow progression for me and for many others, seemingly slowing down the clock while researchers continue the grind of searching for more treatments and other pathways to a cure.

Let me clear up one misconception, though. While this is incredibly exciting and such a blessing, it is not going to make FA go away. My walker isn’t going anywhere, but hopefully it’ll buy me some more time on my feet, as it has been doing for years.

While some aspects of my FA haven’t progressed heavily over the past several years, my balance and walking have slowly declined. I am hopeful this drug can slow progression, but in my experience, it has not reversed any symptoms. In fact, I have gone from walking independently when I entered college to regularly using a walker and dealing with falls pretty regularly. I am incredibly thankful for the determination of these researchers and to have the opportunity to be a FARA ambassador and help contribute towards research by fundraising, raising awareness, speaking on panels and participating in research, and I am hopeful it can be included in a future drug cocktail to contribute towards a cure.

However, the fight will continue. FA is still alive, for now, but this is confirmation that what we’re doing is effective. This approval will continue to fuel the FA community’s fire.