Friedreich’s Ataxia Symposium Oct. 17 Marks Increase in Specialized Care, Community Outreach

The Friedreich’s Ataxia Center of Excellence at The Children’s Hospital of Philadelphia is presenting a one-day annual symposium on Friedreich’s ataxia (FA) Monday, Oct. 17, in King of Prussia, Pennsylvania.

The ninth annual meeting demonstrates the ongoing outreach of the Friedreich’s Ataxia Research Alliance (FARA) to the FA community nationwide and an effort to improve specialized care and knowledge about recent developments in treating the disease.

Patients and patients’ families will be provided with the latest clinical information on therapeutic approaches and current research being conducted in the field of Friedreich’s ataxia. The symposium aims to empower attendees to be able to discuss:

• developments in FA research;
• current clinical approaches to care in FA;
• continued research, clinical trials, and scientific discoveries;
• the importance of advocacy.

Poster presentation sessions will showcase current research, insights and innovative strategies in Friedreich’s ataxia by young researchers and post-doctoral students. This will provide an opportunity for the academic community to interact with patients and families while allowing families to engage with scientists.

An interactive session with the poster presenters will be featured from 6 to 7:30 p.m. Sunday, Oct. 16, during a meet-and-greet reception. Posters will be kept on display until Monday’s lunch break.

For those attending the event, there will be a session dedicated to Friedreich’s ataxia patients’ heroes. The organization asks that participants share who is their personal hero and why, and to let other participants know what qualities touched you.

Attendees can write a brief description of not more than 50 words about their hero and email it to [email protected].

Other presentations will address topics like sensory dysfunction in FA; the effects of symptomatic care in FA; exercise in FA; FARA strategies and the FA treatment pipeline; epigenetics of FA; clinical trials in FA; metabolic signaling in the heart as an FA biomarker, and more.

Registration closed on Sept. 30, but you can find information about the complete program and contact information here.