On Saturday, February 8, 2025, in Chandler, Arizona, there was a free in-person educational event for the FA community.
FA Research Receptions provide individuals and families affected by FA with up-to-date information about Friedreich’s ataxia research and an opportunity to meet others in the community.
I was talking with Kellyn Madden, FARA’s Patient Engagement Manager, to learn a little bit more about the event, and I learned that in 2024, FARA interacted with a few families from Arizona who were connected with a group of other FA families in the state. “We wanted to hold an event in Arizona to get to know the community in the area and provide them with research updates and resources,” she said. “We had about 50 people in attendance. This included about 10 attendees representing pharmaceutical companies including Biogen, Larimar, Lexeo, and PTC. The rest of the attendees were 10 FAers and their friends and family. The agenda for the reception included an introduction to FARA’s advocacy efforts, clinical trial updates from pharmaceutical partners, an accessible living panel made up of FAers and an FA dad, and a session on the basics of genetic therapies.”
I had the privilege of connecting with three ambassadors who were at the reception and hearing about what this amazing event was like for them!
“I went to the Phoenix FA reception in February, and it was absolutely amazing. There were so many people there all fighting toward the same cause: people with FA, friends and family, researchers, and pharmacists. Even Dr. Lynch made a Zoom appearance. My brother got to attend, and this was his first FA event; he learned a lot about the disease and the research going on.
It was great to see friends and catch up. Some of them I haven’t seen in a very long time. I actually randomly met someone with FA in college and haven’t seen him since until this event. It was nice to reconnect!
I spoke on the Living with FA panel with two other FAers and one of their fathers. We talked about the importance of working out and striving to stay independent. For me personally, I emphasized this, but it was hard for me to find a line between independence and safety. I broke my feet on six different occasions as well as my tailbone. Independence is very important, but it’s difficult when it begins to affect your health. We also discussed assistive devices and life hacks. Something that I found to be useful was the Sure Hands lift, which allows a person to travel from one place to another via a machine that picks you up. Overall, it was a very knowledgeable and fun reception!”
-Molly Lawson
“My name is Tiffany Fransen, and I was diagnosed with FA about four years ago when I was 22. A couple of weeks ago, I had the opportunity to attend my first FA Research Reception hosted by FARA in my hometown of Phoenix, Arizona.
The reception was an amazing experience for me and my family. Due to my fairly recent diagnosis and the distance it takes to travel to most FARA events, this was our first opportunity to fully immerse ourselves in the FA community.
We were fortunate enough to hear from FARA Patient Engagement Manager Kellyn Madden about advocacy and how we can get involved online, in our communities, or with local government to make our voices heard and share our stories about FA in order to make a difference. We also learned from Dr. Lynch about some of the basics of FA and how to manage symptoms. For me, this segment was incredibly helpful in clearing up some confusion about this lifelong disease. A panel of representatives from different pharmaceutical companies gave us an update on the drugs they currently have in development and a breakdown of how a drug is approved and made ready for treatment. In the final segment, we heard from FARA’s Director of Research Dr. Liz Soragni and Kellyn Madden about genetic therapies and what we can expect from those trials. That segment gave me a lot to think about and provided valuable information.
I was fortunate enough to participate in a panel about accessible living, where we discussed different mobility aids, tips, and tricks we use as we live with this progressive disease. I was extremely grateful for the opportunity to get to know my fellow panelists more and learn from them.
Before attending this event, I could count on one hand the number of people I knew with FA in Arizona. Afterward, I realized there were quite a few more of us than I had thought. As I was leaving the reception, I felt an immense amount of hope and a strong sense of belonging. It’s easy to feel isolated as someone with FA, but knowing there are others like me nearby helps me feel less alone. Overall, I think hope was my biggest takeaway: hope for understanding from our community and legislators, hope for managing symptoms and living a full life even with FA, and ultimately, hope for a cure. I am going to try to carry that hope with me for as long as possible.
If you have an event like this near you, I cannot recommend it enough!”
-Tiffany Fransen
“The reception in Arizona was a little extra special for us because, for the first time, my brother Trey and his wife Lacey were able to attend. This was their first FARA event, and Trey said he was amazed at how organized and informative it was; everything from hearing the panel speakers to the information in the folders. He said he learned so much new information and was very impressed with Dr. Lynch and with the pharmaceutical companies’ presentations—and the fact that it was all presented in a way anyone could understand. He is looking forward to attending more events in the future. My mom and I try to go to several different events throughout the year, as we always learn something new. This time we learned some crucial information about some trials I am interested in. And as always, connecting with our FA family is one of the best things about going to these events!”
-Emily Rogez
Written by
Mary Nadon Scott, along with some of the FA community