FARA holds half-day regional research receptions across the country in the spring and summer. The first research reception this year occurred in Baton Rouge, Louisiana on April 27. Over 80 people attended the reception, including almost 20 FAers and their family members, representatives from four pharmaceutical companies with FA programs, and FA researcher and neurologist Dr. Subramony from the University of Florida.
Attendees heard updates on FA research, discussed insurance and access issues, and learned about clinical management for FA. The reception ended with a panel of FAers and FA caregivers discussing their experiences participating in research and what it’s like to live through the natural disasters common in Louisiana when you have FA.
The next research receptions will take place in Lisle, Illinois on July 20 and Tacoma, Washington on August 24.
— FARA ambassador, Mary Nadon Scott
Tyler’s story
On April 28, the FARA Research Reception was held at the Capitol Center Hilton in Baton Rouge, Louisiana. In addition to being a great day to learn about Friedreich’s ataxia medical research, both ongoing and upcoming, it was my inaugural event as a newly minted FARA Ambassador. Diving headfirst into the community, I was able to meet so many new friends and grow in understanding about the efforts being taken to combat FA.
For my family, the event started the day before the reception. My mom, dad, and brother (my fraternal twin, Hayden, who is also an FAer) left San Antonio, Texas and drove three hours, arriving at my home in Houston. There I joined them and together we drove another five hours, crossing the Sabine River and passing through the Louisiana marshland before finally arriving at the banks of the Mighty Mississippi. In the evening, we took a stroll down to the river before having dinner at a po’ boy place where my family received some lighthearted ribbing from a local Tiger fan over the Texas A&M shirts we were wearing (Telle est la vie dans le pays de la SEC).
The day of the reception was no less eventful. We arrived early to register. I was eager to meet new fellow Ataxians as well as friends I had until then only interacted with online. Jen Farmer, CEO of FARA, gave opening remarks and we were off in earnest. There were four sessions throughout the day, each with a different focus. Dr. Subramony from the University of Florida answered questions about the clinical management of FA in an FAQ session moderated by FA Ambassador Matt LaFleur. Luke Prettol, a corporate insurance specialist with FA, and Mindy Jones, a representative from pharmaceutical company Biogen, gave a presentation on navigating insurance and medical access when facing a rare disease. A Q&A panel featuring representatives from four pharmaceutical companies involved in current and future FA trials. The final session was a panel featuring FAers who are from Louisiana and their experiences dealing with natural disasters while battling FA.
Learning more about FA research and getting to meet fellow Ataxians was extremely worthwhile! There are bright minds with fresh ideas working to cure FA and it’s encouraging to know that no man is an island. The research reception was overall a great event for both education and camaraderie.
— FARA ambassador, Tyler Rogers
Emily’s Story:
I really enjoyed the research reception and found it interesting and informative. I went with my mom to the event in Baton Rouge. It was our first research reception, though we have attended other events (The symposium and rideATAXIA in Philly, the cure FA Soirée in Edmond, OK, and rideATAXIA Dallas). Baton Rouge was only a 9-hour drive so that made it nice. Because we drive and do not fly, anything within a 10-hour drive is just a day drive for us. I will definitely go to the Baton Rouge research reception again! I know a lot of the information already that is being presented, but I love our FA family and community so that makes these events even more special and we do usually learn something new.
Being a FARA ambassador, I feel it is important to put myself out there as a FARA representative. These events are so important for families to have an understanding of research, hearing the different panel members speak, the different topics and the community support that come with it. I also think it’s great when these events are put on the pharmaceutical companies get to see our faces and to hear our stories to put with the medications they are working on! I feel like it gives them more incentive and understanding while they are doing all their research and trials. Makes it more personal.
I really enjoyed meeting and listening to Dr. Subramony. I have heard of him but never heard him speak. He was very, very good! I look forward to hearing more from him.
We love going to the research receptions and symposiums because we get so much information! I really feel that FARA is great about keeping everyone up to date with all kinds of information. I enjoyed hearing people speak about their daily lives with FA. Even though I live with it also, it’s good to hear about how others deal with things and do things. I really love the patient panels. I think it makes it more personal when they speak about their lived experience, to know that others are going through the same things.
I hope that others can find a way to attend at least one, because it can be so informative especially for the newly diagnosed. They can get a lot of information and support when it is needed so badly in the beginning. There was so little information when I was diagnosed 22 years ago that it amazes me to see how far we have come with this disease!
— FARA ambassador, Emily Rogez