FARA to host April 27 meeting on disease research, management

Research reception provides opportunity to meet others in FA community

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by Mary Chapman |

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Patients and caregivers will hear the latest news on Friedreich’s ataxia (FA) research and management at an April 27 meeting in Baton Rouge, Louisiana.

The Friedreich’s Ataxia Research Alliance (FARA) will host its FA Research Reception at the Hilton Baton Rouge Capitol Center. Topics for the event include clinical management and the FA treatment pipeline.

Registration is open for the meeting, which is free to attendees. Lodging costs are not covered.

“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,” FARA says on an event webpage.

FA is a progressive, degenerative nervous system disorder thought to affect about one in 40,000 people globally, including about one in every 50,000 U.S. residents. It’s characterized by ataxia, a loss of muscle control and coordination. Other symptoms can include speech difficulties, skeletal abnormalities, and heart problems.

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Disease management, navigating insurance

The meeting agenda includes opening remarks by Jen Farmer, CEO at FARA, followed by a session titled, “Clinical Management for FA Through the Lens of FAQs.” That presentation will feature Sub Subramony, MD, professor of neurology at the University of Florida, and will be moderated by Farmer and Matt LaFleur, an FA patient and columnist who serves as associate director of patient engagement at BioNews, which publishes Friedreich’s Ataxia News.

Luke Prettol, lead benefits strategy consultant for AT&T, and Mindy Jones, head of specialty and rare disease services at Biogen, will present a session on navigating insurance and access with a rare disease. There will also be a panel on the drug development pipeline with representatives from Biogen, Larimar Therapeutics, Lexeo Therapeutics, and PTC Therapeutics.

Subramony, FA patients Sydni Dupre and Kailey Newcity, and Trish Ratcliff, mother of an FA patient, will speak on a panel about participating in FA research.

A post-event gathering will provide light snacks and an opportunity for socializing.

More information on the meeting is available by emailing [email protected]

FARA raises funds for research that seeks to treat or cure FA, supports patients and families, and works to increase disease awareness.