This year, on the second weekend of October, multiple fabulous annual events were held in Pennsylvania! On October 11th, rideATAXIA Philly was held. Despite the rain, 500 people were still able to gather indoors at Montgomery County Community College. This number includes the 35 FAers in attendance, and, in the end, over $405,000 was raised for FARA.
After the ride took place, people gathered at the Crowne Plaza for an honorary private screening of The Highest Road (a new documentary featuring Kyle Bryant and Sean Baumstark among others, cycling a vigorous trek in India and the inspiring voices racing to help in the global fight for the first treatment for Friedreich’s ataxia). The day ended with the annual Welcome Reception also held at the hotel.
On October 12th, the FA Symposium welcomed over 235 people in-person, as well as many more participating online. Topics included clinical insights, advocacy, multiple pipeline updates, and, of course, a Living with FA panel. The recordings for this Symposium will be available soon.
FA community member Megan Ploch’s take-away:
“This year, my parents and I drove from South Carolina to Pennsylvania for the fun-filled FARA weekend, but unlike last year, I wasn’t attending the Symposium. Instead, I was there to serve on an advisory board for Larimar Therapeutics and attend rideATAXIA Philly. Even though I’ve been diagnosed with Friedreich’s ataxia for nearly 14 years, I’m still finding new ways to get involved, build connections, and immerse myself in a community that has become such an important part of my life.
One of my favorite parts of the weekend was having my dad deliver a speech at the ride that I wrote about my journey with FA. Being able to share my story with everyone who came out to support FARA and rideATAXIA filled me with gratitude and pride. My journey with FA has shaped so much of who I am, and having the opportunity to put that journey into words and share it with others was incredibly meaningful. It was also a reminder that sharing our experiences can help others better understand what living with FA is like.
Another highlight was reconnecting with so many of my FAmily members whom I had met at previous events, through social media, FA hangouts, or ambassador meetings. It’s always so nice to see familiar faces again, catch up on life, and spend time together in person. While social media has made it possible to build friendships with people across the country, there’s something special about finally being in the same place and getting to talk face-to-face. I also had the chance to meet some new FAers and connect with more members of the community and their families. Every event gives me another opportunity to make connections with people who understand this journey in a way few others can. I left Philadelphia feeling grateful for the friendships I’ve made, the new people I met, and the opportunity to be part of a community that continues to remind me that none of us has to navigate FA alone.”
FA community member Michael Gambino’s take-away:
“To give a little background before I start, I am forty-one years old and have been living with Friedreich’s ataxia for nearly twenty-five years, having been diagnosed at age fourteen. Unfortunately, due to travel issues, I was not able to attend the Symposium in person, but thankfully I was able to participate through Zoom. I previously attended only one other symposium in my mid-twenties, and I must say, research has come a very long way since then. While researchers and scientists already had a solid understanding of FA back around 2014, it seems as though they now know so much more.
My personal favorite panel was the one on gene addition therapy. A couple of years ago, Dr. Lynch mentioned that a patient could only participate in a gene therapy trial once, and for some reason, I never asked him why—well, now I finally understand the reason. Even so, I believe that in time, scientists will figure out a way for individuals to take part in multiple gene therapy trials. What made this panel especially interesting to me is that I am considering participating in a gene therapy trial myself. I think it is only fair to give a huge thank you to the FARA staff and ambassadors, CHOP, the researchers and scientists, everyone involved, and, of course, Kyle Bryant.
Even if a cure is not found in my lifetime, I am very excited for the FAers under me.”
Blog put together by
Brittany Sommerfield