Sitting at my computer desk back home in Louisiana, I am daunted trying to fit the profoundness of October 14-16, 2017, in a simple blog post. Know that the warm, homelike sense of togetherness was there, in much greater amount than this writing implies.
When it comes down to it, togetherness was the most impacting part of this weekend. FA is such a rare, such an unknown disease, that people with FA mostly feel doubly burdened: not only do we have to battle a progressive, debilitating disorder, but we have to explain the symptoms aggravatingly often to those unfamiliar with it. (If we had a dollar for every time someone thought an FA patient was drunk, we’d never need another research fundraiser.) But being in Philadelphia this weekend, among crowds of people familiar with FA, finding people willing and eager to help in all circumstances (I especially appreciated those who offered to push me in my wheelchair down the thick carpeted hall.) - well, that was indescribably comforting.
On Saturday in one of the conference rooms at the Crowne Plaza hotel, I attended the Ambassador Training. The FARA Ambassadors are those who have been diagnosed with FA and help to spread awareness of the disorder and fundraise for FA research. For me, it was the first time meeting many of my good friends I had only known from the internet. The theme of the day was genetic therapy, and we were taught a lot about the new and exciting field of that branch of science, including the highlighted researcher Dr. Ben Deverman. After the training session adjourned, all of the FARA Ambassadors plus many family members and others in the FA community gathered in the hotel’s basement to watch a screening of The Ataxian, which aired on a local TV station in Philadelphia. The sense of community built that day will not soon be forgotten.
Sunday was the day of rideATAXIA Philadelphia. I participated in a ride before, but never with so many of my FA brethren. I was nervous, but decided to start the ride as the same time as my friends, instead of starting early to make sure I had enough time. I’m proud to say I finished within the time limit. I’m even more proud of the record-breaking amount raised at that ride: over $425,000!
Monday, October 16, was the big day: The Friedreich’s Ataxia Symposium, put on by the Children’s Hospital of Philadelphia in coordination with FARA. Hearing speaker after speaker, each familiar with FA, was both endearing and illuminating. We heard presentations on the scientific background of FA, its current research options, gene therapy research, non-gene therapy research, a fashion designer’s presentation on adaptive clothing (which I assumed wouldn’t interest me but was incredible) and a recap of the first rideATAXIA event in France, held this summer: Le Peloton de l’espoir (The Peloton of Hope). I was awed by the team I have on my side battling FA and using all of their talents to help us in whatever ways they can.
I want to thank all of those who made this weekend amazing, especially CHOP, Dr. David Lynch, Dr. Ben Deverman, Ron Bartek, Jen Farmer, Katie, Kyle, Jamie, Angel, Felicia, and the rest of the FARA gang. A slogan of FARA is “Together we will cure FA.” The togetherness I felt this weekend reminded me how powerful we are when we are connected, and how true that slogan is.
*All photos from the unbreakable FARA Ambassador Christie Battaglia.
