Website and Blog for the Sam McMahon Trust

As regular followers of this site know, Mark Geary took time out of his busy schedule to play for Sam at the end of November 2009.  The night was a great success and valuable funds were raised for the Sam McMahon Trust and the Friedreich’s Ataxia Research Alliance (FARA). To read the review and to see photos from the night click here.

October 25th saw the first Ride Ataxia event in Philadelphia. With 350 riders over $100,000 was raised for research. Founded by the inspirational Kyle Bryant (who suffers from Friedreich’s Ataxia), the Ride Ataxia team has been raising awareness and much needed money for research since 2007.

This event raised approximately $55,000 online and the Northeast Philadelphia area Outback restaurants raised $41,000. The $100,000 mark was surpassed with the generous support of sponsors such as Outback Steakhouse, Carrabba’s Italian Grill, Bonefish Grill, Hank’s Beverages, Allied Beverage, G&R Mechanical, F&F Mechanical, Faraco Knife and Slicer Co., Santhera Pharmaceuticals, Miller Coors, Heineken, and Dr. Holly Hedrick.

The day started at 7.30a.m with registration where everybody was able to gather and meet before the ride started. The 50 mile riders started at about 8.45a.m and encountered a tough course. The first riders came in at about 11a.m. While the riders were out on the course there were plenty of activities back at the park. The kids enjoyed a bike loop around the park, crafts, face painting, and hay rides by horse drawn buggy.

It’s clear that the ride had a little something for everyone. The course was challenging even for the experienced riders but there were shorter options which helped get everyone involved.

In the end this ride had huge participation from many people who had never heard of FA before and a huge amount of money was raised. Awareness and fundraising are the key ingredients to finding a cure for this rare disease. Well done to all who took part. We wish we could have been part of the event.

The Health Service Executive (HSE) has reminded everyone at risk of annual influenza this winter to ‘Get the Vaccine, not the Flu!’ The national Annual Flu Vaccination campaign is targeting the usual three key at-risk groups for seasonal influenza -  everyone aged over 65, health care staff and carers, and younger people with long-term illnesses such as asthma, heart problems etc. People who suffer from Friedreich’s Ataxia fall into the third category.  For older people and those who have a chronic illness, flu can cause severe illness and can even be life threatening.

People with either a Medical Card or GP Visit Card will not be charged to visit the doctor for the flu vaccine.  General practitioners may charge a consultation fee to administer the vaccine to patients without a medical card.

For more information people should contact their local GP or the HSE.

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.

The first Ride Ataxia event on the East Coast of the USA takes place in Philadelphia on October 25th 2009. Activities include 10, 25 and 50 mile routes on scenic country roads.

Founded by Kyle Bryant, who suffers from Friedreich’s Ataxia, the Ride Ataxia team has travelled 3300 miles over the past three years. They have raised awareness about Friedreich’s Ataxia and $700,000 in research funds.

Supported by Outback Steakhouse, the event will benefit the Friedreich’s Ataxia Research Alliance (FARA) and the Children’s Hospital of Philadelphia (CHOP) Friedreich’s Ataxia Programme. Both are non-profit organisations dedicated to research and working to find a cure for FA.

For those who can’t sign up to take part in the event donations can be made online.

In 1990 Dr Susan Perlman, a clinical Professor of Neurology at UCLA and Director of the Genetic Neurologic Diseases Clinical Programme, the Ataxia Centre and the Post-Polio Clinic and Nadia Hamed, Nutritionist created ‘Nutrition and the Patient with Progressive Cental Nervous System Disease‘. Revised this year, the manual is an essential guide to good nutrition, with particular focus on patients with neurological disorders of movements and related diseases.

Friday July 17th turned out to be a great day for golf at Bodenstown Golf Club in the heart of county Kildare. Friends, family and members of the club rallied together to raise money for Sam and the Friedreich’s Ataxia Research Alliance (FARA). The mature Bodenstown course, with its parkland layout, extensive trees and undulating greens posed a challenge to the teams of all abilities. A presentation took place later in the evening. President, Peadar Cunningham was on hand to congratulate the winners and to present them with superb prizes, organised by Sandra McKenna.

Many thanks are due to the gents and ladies committees for their support in organising this event and to Lady Captain, Phil Duggan and Gents Vice-Captain Christy Cullen for their presence on the day. Particular thanks go to Fergus Egan, Clare Egan, Maura Higgins and Vivienne Bond for their assistance and help throughout the event. The day would not have been the same without the generous support of sponsors who provided refreshments, sponsored holes and donated prizes.