Starting on October 7 and ending October 9, 2023, an annual FA weekend full of events was held in Philadelphia. “My weekend started with some flights on Friday to arrive into Philly from Canada. Travel went alright, only some minor hiccups were involved, which is good when traveling disabled as issues are commonplace. The true events started in King of Prussia on Saturday with an ambassador program reception with people from all over the world! On Sunday, the famous rideAtaxia Philly event happened in Blue Bell. Over $425,000 was raised in support of FA research progress. This event brought together 500 people, including 33 individuals living with FA, 10 researchers, and 5 pharma industry partners. It was such a success and so much fun!
Sunday evening another reception was held for ALL symposium registrants. Monday, the main event was held, the FARA and CHOP’s (the Friedreich’s Ataxia Center of Excellence at Children’s Hospital of Philadelphia) hosted Symposium. Twenty-five speakers were present and some amazing topics were held. You can find the recording on FARA’s YouTube channel. This was my 5th symposium and it was as it always is, which is phenomenal, and by far my favorite annual event. I learned so much, saw so many old friends, and made some new friends. I had the opportunity to be a panelist this year which was amazing and I had my parents attend again after experiencing the weekend events for the first time last year.
My main takeaway was something my co-panelist, Gretchen Anderson, had said (after hearing from another FA parent). “Live your life today, you’re your healthiest right now.” Not saying there’s no ups and downs with FA, but bottom line, even with the treatments that now exist, FA is progressive. Don’t live in the past or waiting for a cure in the future. Do what you want now, you don’t know what tomorrow brings. FA or not, just don’t spend your life waiting for the unknown.” - Brittany
“My parents and I have never missed a symposium. The first one in 2009, we sat at a table alone. There were maybe 20 to 30 attendees and we left that weekend with forever friendships and a sliver of hope.
I like to go to hear new updates, meet new and old friends from around the world and show others that even though you can have an early diagnosis like myself at age 12, life is not over but just a little different than planned.”
- Erin
I like to go to hear new updates, meet new and old friends from around the world and show others that even though you can have an early diagnosis like myself at age 12, life is not over but just a little different than planned.”
- Erin
“Until the date and location of the symposium was announced, we only dreamed about travelling to America. It's a long distance though... approximately 6500 km air distance...more than 10 hours of flight by plane…and I've never even set foot on a plane, let alone flown for so many hours.As the date of the symposium was approaching, we researched and planned more and more what our itinerary would look like. We also persuaded Goran to come with us. The decision was made –– we bought plane tickets, made passports and got a US visa so that we could even go on a trip.
We were surprised with huge buildings and long highway lines that brought us to our hotel in Philadelphia.
A wonderful welcome at the ambassador reception dinner. Finally getting to know the team in person with whom I only had contact via zoom meetings once a month. A bunch of positive emotions, stimulating life stories and future plans.
The next day, we went to the premises of a huge University [for rideATAXIA]. A bunch of different buildings, landscaped surroundings, walking paths, sport fields. Successfully performed rideATAXIA. Some of us tried riding that special bike. However, I continued to walk around the University –– successfully walked to the end even though I had ten breaks to rest. After completing the main part of the day we hung out with the rest of the team and bought Jennifer Gasner's book "My Unexpected Life" and purchased other souvenirs –– even FA socks for the winter! I also managed to do a short interview.All the events and gatherings with the team on the last day were rounded up in a Symposium. It was instructive to listen and hear the news about the research of our illness. To make contacts with dear families and leading people who have been fighting FA for a long time. Connecting with everyone was one of our main goals.
Of course, after the symposium, we took some time for sightseeing.
Philly FA Symposium brought up an awesome weekend. We caught up some new friends and had a great time. We need to talk about FA and be loud. Our voice needs to be heard. If we don't say what we need, no one will even hear us. The strength of the team is each individual member. The strength of each member is the team.
Together we are stronger, and we will help to find a cure!"
- Dragana
Part 1 was written by FARA ambassadors Brittany Sommerfield, Erin O’Neil, and Dragana Obadić. Part 2 will be online next week, November 6th.
