Our FAmily had a wonderful event-filled weekend this October in Philadelphia. The weekend started on Saturay, October 5 with a FARA Ambassador Program dinner, which allowed FA volunteers to enjoy an evening together. The next day took us to Montgomery County Community College in Blue Bell, PA. The Sunday event welcomed over 550 participants, including over 30 FA families, to attend the annual rideATAXIA Philly. Together, we raised over $387,000 in support of FA research!
Finally, on Monday, October 7, FARA and the Children’s Hospital of Philadelphia proudly hosted this year’s FA Symposium at the Crowne Plaza in King of Prussia, PA. It brought together over 250 in-person attendees, including over 43 FA patients, and nearly 100 participants virtually.
The symposium sessions included:
- FAQs in Clinical Management for FA
- FA Drug Development Pipeline and Q&A Panel
- Living with FA – Travel and Accessibility
- Digital Measures of Movement in FA
- Breakout Sessions on Living with FA: Sports, Hobbies, and Lifestyle and Finding Your “Why?” and Navigating the Path Along the Way
If you could not join us in person or virtually on October 7, you can now access many of these session recordings on our YouTube channel. View the FA Symposium 2024 playlist here.
“It was my 6th time attending these spectacular events in Philly. As it is every year, my favorite aspect of the weekend was the community building. Seeing so many old and new friends. I also really enjoyed the travel session of the symposium. I spent over 5 years in the industry and also travel frequently myself. I found it all very relatable!
“…I love that Daniel said that in the moment it might not feel good to get a response of X, Y, or Z, but having those encounters and talking about them and putting them out there is what helps make new processes and regulations. I think my final advice is don’t be afraid to travel. Get creative, think about it, and plan ahead if you need to, but don’t let these challenges stop you from enjoying life and the rights that we have access to. So whatever that is, whether it’s RV, Uber, on your trike, or plane, just live your life!”
– Sean Baumstark
“Travel is very stressful, nowadays I feel more often things go wrong than right. But it is worth it. Plus the hiccups feel incredible on the other side. It is scary but beyond rewarding in the end. Just remember to advocate for yourself.”
– Brittany Sommerfield
“I left the FARA symposium in Philadelphia with a renewed sense of purpose and passion for advocacy. Hearing the panelists share how they’re living life at the beat of their own drum despite FA’s most diligent attempt to slow us down was so refreshing. I departed from Alabama feeling lost and stuck in the situation I was in, and I returned to my sweet home motivated to jump back into the ring to fight FA.
I flew up for the weekend solo and was embraced from the moment I arrived by my FA family – as if there was ever a doubt. I couldn’t finish a meal the entire weekend because I was constantly shaking hands, taking pictures, and catching up with old friends in the FA community. My Philly cheesesteak getting cold was a shame, but I wouldn’t change a thing.”
– Noah Griffith
“One of my favorite weekends of the year is the rideATAXIA Philly event, followed by the FARA FA Symposium. This was my 10th year attending. The rideATAXIA event was held on Sunday, October 6 at Montgomery County Community College, and it was so very incredible, magical, meaningful, and impactful. rideATAXIA Philly was a FantAstic success!
Our collective dedication and support show that none of us are in this alone. As long as we remain driven by each other and keep taking action, we will continue making progress.
One of my most treasured activities during the event is to be at the start/finish line and cheer on the participants and show my gratitude by holding a Thank You poster.
I always leave this FAbulous weekend with my heart feeling full and my mindset bucket is overflowing with love and gratitude!”
– Mary Nadon Scott
All in all, the weekend of October 5–7 2024 was a weekend not to be missed by the FAmily!
Written by
Brittany S. with help from the FA community
