As you probably recall, we just passed the year anniversary of my Friedreich's Ataxia diagnosis (August 19th). To reflect on the past year and how far we have come, I wrote a blog post entitled "What a Difference A Year Makes." Through the power of social media, my post made its way over to the folks at the Friedreich's Ataxia Research Alliance (FARA). Felicia with FARA contacted me a few weeks ago regarding this blog post. She had passed it along to Jen Farmer, the Executive Director at FARA, and Jen was "inspired" by my article. She asked if she could share my story at the FA Symposium in Tampa on September 4th. I said "of course!"
The symposium went great and they were able to stream video of the talks. If you click on the video here, you can see 3 hours of symposium coverage. Jen Farmer kicks off the symposium with my story. If you skip through the introduction, Jen starts sharing my story at about minute 20 in the video. She then gives a brief description of FA, and then concludes my story around minute 25. It is pretty neat to hear!
There is also an article they released about the symposium and the theme "What a Difference a Year Makes" here.
I am so humbled to be recognized by FARA. I am eternally grateful for the work that those fine people do everyday. The FA community has so much positive momentum right now thanks to FARA, I can’t wait to see what next August 19th will look like! Thank you again for all of your support! I know that “Together We Will Cure Friedreich’s Ataxia!”