Website and Blog for the Sam McMahon Trust

Today, March 18th, Billy Tauzin, President and CEO of  Pharmeceutical Research and Manufacturers of America (PhRMA) honoured Ron and Raychel Bartek for their dedicated work in raising awareness about Friedreich’s Ataxia (FA).

The Barteks are co-founders of the Friedreich’s Ataxia Research Alliance (FARA). FARA works to find treatments and a cure for FA. But Raychel and Ron are not just advocates, they are the parents of Keith, who sadly died recently at the age of 24. Raychel and Ron have continued to work tirelessly for FARA. Their dedication to the fight to find a cure for FA is an inspiration to those who have been diagnosed with the condition and their families and friends. Without them the 6 clinical trials and the various other therapeutic approaches would not be underway.

Those touched by FA appreciate you Ron and Raychel. It’s great that the wider community has recognised your work too!

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.

The Sam McMahon Trust has organised a number of fund raising events throughout 2009. The monies raised are used for Sam’s medical needs and for the Friedreich’s Ataxia Research Alliance (FARA). We were delighted to present FARA with a cheque for $10,000 at the Friedreich’s Ataxia Symposium in Philadelphia  on November 14th. Read their acknowledgement letter here.

Ron Bartek, President and founding member of FARA reminds us that

“Acting alone, there is very little any of us can accomplish. Acting together, there is very little we will NOT accomplish!”

Thank you to all of those who helped out at the events or contributed to the fund. We look forward to another successful year in 2010. Check out our events page for details of Neven Maguire’s Cookery demonstration next March.