Friedreich’s Ataxia Symposium 2009
The second annual Friedreich’s Ataxia Symposium was held on 13th and 14th of November. Organised by the Children’s Hospital of Philadelphia 150 people attended. This is double the number that attended the first meeting last December. An informal ‘meet and greet’ took place on Friday evening. People had a chance to catch up with old friends and meet new families. In addition there was a superb wheelchair ballroom dancing demonstration by Dinah and her dance partner Rob.
On Saturday there were presentations dealing with biochemical mechanisms in FA, scoliosis, neurological perspectives, ophthalmological issues and cardiac issues. There was also an update on the research pipeline and clinical trials that are underway. Photographer Rick Guidotti showed photos of children and adults with genetic conditions. He spent the morning taking photos of people with FA and he intends to include these on his website. Richard, Keith, Jennifer and Allison talked about the impact that FA has had on their lives and careers. Kyle Bryant concluded the conference with a review of the hugely successful Philadelphia Ride Ataxia event.
The success of the symposium hinges on the enthusiasm and dedication of Dr David Lynch and his team from the Childrens Hospital. There is no doubt that his willingness to talk to and spend time with families makes the distance to be travelled so worthwhile. The up-to-date information and the chance to meet other families coping with FA means that the annual symposium is an event that can’t be missed!