This year, on Monday, October 13, the 18th annual FARA & CHOP symposium was held at the Crowne Plaza in King of Prussia, PA. The event welcomed approximately 250 attendees, including 49 individuals with Friedreich’s ataxia, as well as many participants joining virtually. Sessions were spread throughout the day and included management guidelines, pipeline updates, a patient panel on sports/exercise, and advocacy. Jeremy Cowart (professional photographer living with FA) gave an outstanding keynote session. The day flowed well with touches of mental wellness, humor, education, and, of course, hope for the FAmily.
If you were unable to join us in person or virtually, recordings will be available soon and can be accessed on our YouTube channel.
Interactive photo stations, pharma company tables, and plenty of community connections were offered over the weekend.
The day prior, on Sunday, October 12, rideATAXIA Philly was held at its usual spot, Montgomery County Community College in Blue Bell, PA — just 20 minutes from the Crowne. Although the weather was not in favor, 500 participants joined the gathering, including 36 FAers. Over $400K (and countin’) was raised for FARA to go towards research to cure FA.
Ambassador take-a-ways:
“This was my 7th time attending these events. I absolutely love it, every year it is slightly different, and I find it very motivational. Just seeing and being with the community is definitely the highlight for me. My cousin Jennifer came with me this year. We have travelled together a few times now, although this was her first FA (FARA) event! She found everyone so incredible and was amazed at the resources they’ve put together in these past few years for something so rare. There are big hopes for more leaps in research always. The Community involvement for FAmily is inspiring. The huge amount of attendees, even with the crappy weather, shows so much.”
– Brittany Sommerfield
“This was my first time attending both the FARA symposium and rideATAXIA Philadelphia. In fact, it was my first time at any rideATAXIA! Even though I’ve been diagnosed for nearly 13 years, this year I decided I wanted to fully immerse myself in the FA/FARA community, and what better way to do that than to attend these two events! My favorite part of the weekend was finally meeting so many of my FAm that I’ve connected with through social media, FA hangouts, or ambassador meetings. It was so great to be able to shake their hand or give them a hug and speak with them in person. I was also able to meet a lot of new people, whether it be other FAers, parents, children, siblings, researchers, or doctors.”
– Megan Ploch
“We just got back from our 5th Philadelphia Symposium and my annual appointment with the one and only Dr. Lynch. There are simply not enough good words to say about the symposium! It is amazing seeing friends that you only get to see once a year, seeing and hearing of all of the incredible work and research that goes into Friedreich’s ataxia, and as always — I so appreciate everything Dr. Lynch does! All in all, it was a fantastic weekend and I will definitely keep going back!”
– Morgan Talevich
Written by:
FARA AP Blog team members,
Brittany, Megan, and Morgan
