The 5th Annual Friedreich’s Ataxia Symposium, organised by the Children’s Hospital of Philadelphia and FARA Monday took place on October 8th at the Crowne Valley Forge Hotel in Philadelphia.
The day began with presentations from Dr David Lynch (CHOP), Dr Giovanni Manfredi (Scientific Advisor FARA) and Dr Robert Wilson (FARA). Lisa Friedman presented her findings in relation to Pregnancy and FA and Dr Kimberly Lin gave updates in relation to the heart in FA patients.
Jesse Billauer shared his inspirational story; following spinal cord injury Jesse continues to achieve his dreams. He recalled the events surrounding his injury and the work that he is involved in with the Life Rolls On organisation.
After lunch there were very interesting presentations on HDAC inhibitors, Gene Therapy and upcoming trials – all of these are promising developments for patients with FA. The day concluded with a panel discussion on Accessible Travel and a Question & Answer session moderated by Ron Bartek (President of FARA).