Website and Blog for the Sam McMahon Trust

The 3rd annual Friedeich’s Ataxia Synposium has been confirmed for Saturday 13th November at the Philadelphia Marriott at the heart of the city. There will be updates on clinical research and trials, information on diabetes, cardiology and neurology and the keynote speaker will be Richard Cohen author of Strong at the Broken Places.

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.

Another date has been added to the ‘Ride Ataxia’ calander for 2010. The Philadelphia event will take place on Sunday October 10th. Further details will be made available in the coming weeks. At the Symposium last November there were hopes that the 2010 Symposium would take place at the same weekend. Nothing has been confirmed yet but fingers crossed. Those of us who travel great distances to attend the Symposium might just get the chance to be part of the great Ride Ataxia event!!

Check out the Friedreich’s Ataxia Research Alliance (FARA) updated list of resources for patients and families here. There is a video which provides an introduction to Friedreich’s Ataxia and the work of FARA. All of the presentations from the Friedreich’s Ataxia Symposium ‘09 are included. Also available is an  inspiring video of Donovan Simpson, age 13 who suffers from Friedreich’s Ataxia as he takes on the challenge of adaptive skiing this year.

If you weren’t in a position to attend the second Friedreich’s Ataxia Symposium in Philadelphia last November or if you would like to refresh your memory, then the videos of the different presentations are now available at the Children’s Hospital of Philadelphia (CHOP) website. Click here to view the videos.

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!

The Children’s Hospital of Philadelphia recently announced the dates for its forthcoming Friedreich’s Ataxia Symposium. Of immense value to patients and families, the symposium will provide people with up-to-date clinical information, therapeutic approaches and current research being conducted in the field of Friedreich’s Ataxia. The symposium will take place on November 13 and 14.

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