Presentations will include information about Neurological Features of FA, Diabetes, Biochemical Mechanisms and Therapeutic Pathways. There will also be presentations on current research and a Q & A session with the Research Panel.

For more details about the Symposium, information about the hotel and the relevant links for registration, click here.

It’s hard to believe that this will be our 4th year attending this symposium and we wouldn’t miss it for the world. We are looking forward to meeting all of the people who have now become a very important part of our extended family!

The Meet and Greet session on Friday evening gave people the chance to get together and to discuss their thoughts and experiences. Kyle Bryant and his Race Across America team mates shared their memories of the eight day, seven hour and fifty nine second race. The team were followed by a film crew and over the coming months the footage will be edited and a documentary will result.

Saturday began with an early start at 7.30. There were presentations on Biochemical Mechanisms and Therapeutic Pathways, Financial Planning and Personal Care Assistants. The keynote lecture was given by Richard Cohen, author of Strong of the Broken Places.

Over the coming days we will post important, up-to-date information that we learned about managing FA.

There will be presentations on pathophysiology and therapeutic pathways, clinical trial updates, the heart in FA patients, diabetes and the keynote lecture will be given by Richard  Cohen, author of Strong at the Broken Places.

For further details about registration, the programme or hotel accomodation click here.

With up-to-date information and a chance to meet some of the greatest experts in the world, this is an invaluable experience for those who have FA and their families.We have our flights and hotel booked!!

This symposium is a ‘one stop shop’ on all things FA. The very BEST source of up-to-date information (we believe) combined with the opportunity to meet and talk with the medical experts,  families who care for people who have FA and those who live with FA.

For more details about the Symposium and the Philadelphia Marriott click here.

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!

Further information can be obtained from the Continuing Medical Education Department at the Children’s Hospital of Philadelphia at (215) 590 5263.