Website and Blog for the Sam McMahon Trust

Details about the 4th Friedreich’s Ataxia Symposium have just been released. The conference will take place on Saturday October 8th at the Crowne Plaza Valley Forge located in King of Prussia PA.

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 third annual Friedreich’s Ataxia Symposium took place last weekend in Philadelphia. With approximately 250 in attendence this was the largest gathering to date.

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.

The final details and programme for the 3rd annual Friedreich’s Ataxia Symposium, sponsored by the Children’s Hospital of Philadelphia, have been released. Pre -registration is required and the registration deadline is October 22nd.

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!!

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.