Part 1 - https://www.curefa.org/ambassador-blog/fa-symposium-and-rideataxia-philly-2023-recap-fara-ambassadors-perspectives-part-1-of-2
Starting on October 7 and ending October 9, 2023, an annual FA weekend full of events was held in Philadelphia. “This year’s rideATAXIA Philly and Symposium long weekend events completely ‘filled my bucket.’ It was a busy four-day event for me and my family that was jam-packed with events, memories, and special moments. For me, my husband, and my Dad, it was our 9th Symposium. They have all been wonderful! But for me, what made this year absolutely incredible was that we were able to bring our two youngest kids. To have them with us and watch them experience and take in every detail of their first big FARA event was nothing short of amazing.
We began our family adventure with a 9-hour road trip, driving from our home in a small town in rural central Vermont to urban King of Prussia (a suburb of Philadelphia), Pennsylvania, in some powerful and torrential rain. After arriving and checking in, I parted ways with my family for the evening and headed off to meet with FAmily at the Ambassador dinner and hangout event. A magical evening of reunions, hugs, laughter, and smiles!
The following morning was rideATAXIA Philly- one of my favorite events of the year! My whole family participated and proudly wore our purple capes as part of Team Christina, the Purple Caped Crusaders (a tradition that began eight years ago- the very first time I attended rideATAXIA Philly). My husband and I volunteered (expressing gratitude and cheering on riders and participants), and Gabe (our 11-year-old), Elijah (our 13-year-old), my Dad, my cousin, and her partner (who live in Philadelphia) all rode the 8-mile loop. After our fun (and exhausting) day, we gathered with FAmily later that afternoon for the Symposium Meet and Greet. A great way to kick-off the Symposium! We ate yummy snacks and finger foods, met scientists and researchers, saw and greeted old friends and new ones, laughed, and enjoyed the company of being together as a FAmily.
The Symposium was the next day, with breakfast from 7:00-8:00 am. After we chose what table would work the best for us and ate some breakfast in the big main room, the boys and I traveled over to the first-time-attendee breakfast. In this smaller room, we got to meet a new FAmily and exchange smiles and greetings. The Symposium agenda was 8:15-4:30, a long and fantastic day full of amazing presenters, panels, and breakout sessions. The networking, information, knowledge, collaboration, and community are powerful and impactful. A magical day that was amazing! Our last day began with a journey into the city for my two visits to the Children’s Hospital of Philadelphia (CHOP), my annual neurology appointment with Dr. Lynch, and my final/end-of-study visit for the Omav extension trial. It was an emotional appointment, for sure. RTA-408 was the very first drug trial that I participated in about nine years ago, and now that I am about to turn 42, I am unsure if it might be the last trial that I qualify for. But, we now have Skyclarys, the first FDA-approved treatment for FA! (for patients over 16 years old in the US). After those two appointments, we began our journey home.”
- Mary
“Early last month I was able to attend the annual Philadelphia Symposium. This memorable weekend was filled with many firsts for me: this was my first symposium in Philadelphia since the pandemic; my first symposium without my parents, I traveled with my friend John, as this was his very first symposium; met many people for the first time; and most notably, my first time speaking at the Philadelphia symposium.
John and I flew into Philadelphia Saturday morning and spent the day exploring the city by visiting monuments and trying Philly cheesesteaks. Sunday morning we attended RideATAXIA Philadelphia as spectators to cheer on riders. I also got to see many of my friends I talk to often online, including one of my best FA friends, Michael. After the ride, John and I went on a brief shopping trip in the King of Prussia mall, before attending the FARA meet and greet that night. I went outside my comfort zone talking to many new FAers, parents and friends attending the symposium from around the world.
Monday was the symposium and it was very eventful. I woke up at 5:30am and didn’t go to bed until 10:30pm. At the symposium, I was privileged to listen to familiar faces, such as Jen Farmer and Dr. “Just call me Dave” Lynch. Soon after came the moment I was so excited for, my panel speech. I was joined on the panel by fellow FA friends Brittany Sommerfield and Connor Sweeney, and FA parent Gretchen Anderson, moderated by Kellyn Madden, to talk about life with FA. I was prepared, as I spent weeks planning and rehearsing what to say, and I even memorized my speech. I could tell our panel captivated the audience by looking at people’s faces as we shared our own stories and tips. When our panel was over, we were cheered offstage. When I got back to my table to check my phone, I was greeted by a multitude of friend requests on social media, as I included my social media in my speech, proving how many viewers there were in the building and online watching the livestream. I celebrated shortly after by participating in the FA group picture. Then I went to another smaller room to speak on the panel for a second time! Following the symposium, I talked with even more people and spent hours in the lobby bonding with my FAmily. When I got back to my room, I was exhausted and my muscles were sore from sitting all day, but it was all worth it.
I wish everyday was that incredible. I flew home Tuesday morning, already excited for next year. There was so much packed into one weekend, I feel so grateful to attend and privileged for the opportunity to speak on the panel. This has been one of my favorite FA events, and I think everyone should experience the Philadelphia symposium.”
- Brendan
John and I flew into Philadelphia Saturday morning and spent the day exploring the city by visiting monuments and trying Philly cheesesteaks. Sunday morning we attended RideATAXIA Philadelphia as spectators to cheer on riders. I also got to see many of my friends I talk to often online, including one of my best FA friends, Michael. After the ride, John and I went on a brief shopping trip in the King of Prussia mall, before attending the FARA meet and greet that night. I went outside my comfort zone talking to many new FAers, parents and friends attending the symposium from around the world.
Monday was the symposium and it was very eventful. I woke up at 5:30am and didn’t go to bed until 10:30pm. At the symposium, I was privileged to listen to familiar faces, such as Jen Farmer and Dr. “Just call me Dave” Lynch. Soon after came the moment I was so excited for, my panel speech. I was joined on the panel by fellow FA friends Brittany Sommerfield and Connor Sweeney, and FA parent Gretchen Anderson, moderated by Kellyn Madden, to talk about life with FA. I was prepared, as I spent weeks planning and rehearsing what to say, and I even memorized my speech. I could tell our panel captivated the audience by looking at people’s faces as we shared our own stories and tips. When our panel was over, we were cheered offstage. When I got back to my table to check my phone, I was greeted by a multitude of friend requests on social media, as I included my social media in my speech, proving how many viewers there were in the building and online watching the livestream. I celebrated shortly after by participating in the FA group picture. Then I went to another smaller room to speak on the panel for a second time! Following the symposium, I talked with even more people and spent hours in the lobby bonding with my FAmily. When I got back to my room, I was exhausted and my muscles were sore from sitting all day, but it was all worth it.
I wish everyday was that incredible. I flew home Tuesday morning, already excited for next year. There was so much packed into one weekend, I feel so grateful to attend and privileged for the opportunity to speak on the panel. This has been one of my favorite FA events, and I think everyone should experience the Philadelphia symposium.”
- Brendan
“My name is Brona Kearney. I live in Ireland. I have been diagnosed with FA for 21 years, but this is the first time I have made the trip over for a FARA (Hosted) Symposium. My sister (who also has FA) and my mother has attended the symposium previously. My mother has worked with FARA on projects and with others worldwide about FA research for years, so we have been aware of FARA for years. As my progression has gotten worse, I understand why organizations like FARA are so important to FAer’s and the FA community in general. For this reason, I choose to become a FARA Ambassador this year. I am trying to bring some of that FARA magic to Ireland as well. As you can imagine Philadelphia is a long way to come when you live in Ireland but living on an Island means going to other countries is second nature. So, I arrived on Saturday evening in Philadelphia and was immediately greeted by others in the FA community who happened to be in the hotel. The next day we ventured out to Ride Ataxia. I have a trike myself in Ireland and for this reason I found Ride Ataxia really interesting to see all the different FAer’s using them and those who help and support them with the trike. I also was gobsmacked by the amount of money the Ride raised especially the amount raised by individual competitors.
Then came the meet and greet on Sunday evening before the conference which was a lovely way to meet people in the FA community before our busy day at the conference on Monday. So, the main event being the conference began on Monday morning. Some people found the welcome breakfast starting at 7.15 am a little early but for me, this was a good thing as the The time at home is 5 hours ahead of Philadelphia so at home it was already 12.15 pm.
The big takeaways I took away from the conference:
- 1. Was the hope ‘Skyclarys’ is giving,
- 2. The quantity of research still ongoing, and
- 3. The strength of all those with FA both mentally and physically and the strength of the FA community.
- Brona
Part 2 was written by FARA ambassadors Mary Nadon Scott, Brendan Halverson, and Brona Kearney
