Hi, friends. I have a disability called Friedreich’s Ataxia. FARA–Friedreich’s Ataxia Research Alliance–is an organization of doctors, patients, scientists, pharmaceutical companies, patients’ friends and family, etc. that works to advocate, raise money, and search for treatments and a cure for FA. This is my fifth year attending the annual conference in Philadelphia. [Cover Photo Credit: Stephanie Magness, a FARA Ambassador]
We drove from North Carolina to Philadelphia, Pennsylvania on Saturday, leaving early and arriving in the evening. There appeared to be a wedding or party taking place that night, and people dressed to the nines roamed through the hotel. I wondered what they thought of seeing so many wheelchairs and scooters in one place!
Sunday, we went to rideATAXIA, a huge fundraiser that occurs in several cities across the US and internationally. The rides consist of FA’ers using trikes or hand-cycles and able-bodied allies using regular bikes. People “sponsor” the riders, who sometimes cycle as far as 50 miles! Shout-out to Outback Steakhouse, Carrabba’s, and Bonefish Grill for providing delicious and bountiful food after the rides.
At rideATAXIA Philly 2018, $312,000 was raised for FARA!
Sidenote: The man who started rideATAXIA and is essentially the face of FA is Kyle Bryant. He’s awesome; he literally rode coast to coast ON A TRIKE in a documentary called The Ataxian. I take a look at him and think that age isn’t as important as the way you live your life/take care of yourself. If you like podcasts, check out Two Disabled Dudes.
Sunday night, we attended a meet and greet where FA’ers and family/friends/etc. get to mingle. We met new friends and caught up with old ones. It’s like a family reunion with great food and free beer and wine.
Monday morning, I hauled my butt out of bed to be downstairs at 8 am for the conference, which featured about ten presentations with breaks over the course of eight hours. Every presentation besides the patient panel pertained to an avenue of treatment being explored–stem cells, gene therapy, medicines, etc. Yes, the presentations are kinda dry, but I was hanging on the edge of my seat because I am SO HOPEFUL! We are going to cure Friedreich’s Ataxia!
We reluctantly said goodbye to friends, already anticipating next year’s FAmily reunion. [Get it? FAmily?] We stuck around ’til the next day because I had a doctor’s appointment with David Lynch, a neurologist and FA expert, at CHOP (Children’s Hospital of Philadelphia). I requested prayers on Twitter and prayed silently on the drive there. Why? A few months ago, my cardiologist back home told me that I’ve developed a severely thick heart muscle. Since then, the fear of an imminent heart attack has resided in the back of my mind.
My silent prayer went something like this…Lord, I confess that I have sinned, but please receive my prayer…help me trust You instead of worrying…Thy will be done, but I am not ready to die yet…please let him tell us something to ease my mind…Amen
Dr. Lynch did, in fact, ease my mind, saying that a thick heart is not that bad by itself; a weak heart is much more dangerous. My heart is thick yet strong, so I’m going to keep working out a lot and challenging my heart muscle. A skeptic may say that Dr. Lynch would’ve told me that info with or without my prayer, which is probably true…but I believe that God heard my request for personal peace and granted it. I’ve seen prayer work in my own and others’ lives enough times to believe in its power. [And, considering the popularity of quasi-spiritual trends, I’m feeling less pressured to justify my belief in the supernatural.]
I love being connected to this community of beautiful, resilient, and awesome people.
Thanks for reading! I’m back to normal schedule next week. I’ll be catching up with y’all’s blog posts for the next few days. Stay tuned for the first installment of “Disability Chat” next week. 🙂
[Donations can be made at curefa.org]
Retrospective Lily 
Leave a Reply