On Sunday, July 30, 2023, over 70 people representing 10 FAers, got together in historic Lexington, MA, for rideATAXIA Boston, a local Hometown ride. We enjoyed beautiful weather and a scenic ride along the Minuteman Bikeway. The event featured an 8-mile ride, family-style lawn games, a children’s activity craft table, and a gathering place to enjoy each other’s company. Because of the generous support of friends and families, we raised over $15,000 for FA research! It was an amazing day, and it felt so wonderful to come together as a community with a special bond (FAmily) and share time together.This was the first FARA event that my children have attended, which made this FAntastic event mean even more to me. We live in Vermont, a small New England state. Having a local Hometown ride provided them with some amazing opportunities. For the first time, they met other people with FA, just like their mom. They got to see other people in wheelchairs and adaptive equipment, they got to meet and talk to them (hear other FA voices), hear our stories (some of them gave small speeches before the ride), and watch us do things in our own way (roll over grass, participate in the ride, and observing every detail)—a special day for sure.
In some of the pre-ride speeches and expressions of gratitude, there was some celebration of the milestone of the first FDA-approved treatment, SKYCLARYS (omaveloxolone), and how it illustrated the power of grassroots events like this and raising funds for research. I had the opportunity of participating in part of the early phase of the trial when my youngest was two years old. He is now 11 years old. Sharing this in-real-life timeline with researchers that were there, and Lexington community members who stopped by to chat and learn more about FA and FARA, was neat.The power of our small yet mighty, tight-knit community is powerful. FARA was founded 25 years ago by a small group of patients, families, and a few expert scientists and clinicians. Today it has grown into a global organization funding over $9 million in FA research, leading to the first approved therapy for FA earlier this year! rideATAXIA was started by Kyle Bryant in 2007 to unite people and raise funds for FA research. Since its inception, rideATAXIA events have raised invaluable awareness for FA and over $10 million in support of FA research grants. It feels impactful that at this stage in our FA journey, with the first approved therapy, we return to our roots and come together as a small Hometown community. A community with a common goal––to cure FA!
I am so grateful to everyone who helped make this event so amazing. We plan to grow the ride next year and hope you can join us!Written by
