Website and Blog for the Sam McMahon Trust
The Friedreich’s Ataxia Society of Ireland is hosting a Parents’ Information Meeting at the Stillorgan Park Hotel on Friday April 16th from 4.00 to 6.oo pm. There will be presentations by Dr David Webb, Debby Lambert (Genetic Counsellor) and Dr Alison Stevenson from Ataxia UK.
On Saturday 17th the society hosts its annual AGM at the same location from 12.00 to 5.oopm. For more information and contact details, click here.
Over the past number of months Sam’s mum Caroline has been working with the Special Education Support Service (SESS). Their role is to enhance the quality of teaching and learning in relation to special educational provision. The SESS works under the Teacher Education Section of the Department of Education and Science.
Some time ago the SESS published ‘Signposts’, in order to outline how differing categories of special educational need can affect teaching and learning. It also offers tips for teaching, along with additional resources and references. It is a well organised and informative guide for all involved in education. Until now there was nothing about Friedreich’s Ataxia but all that has changed. Thanks to the vision of the SESS and Caroline’s willingness to put together the necessary information.
Feel free to download the guide here. A copy will be made available to all of the primary and secondary schools in Ireland. With understanding there is no reason why children and young people with FA can’t succeed in school and it is hoped that this guide will help to broaden understanding and further raise awareness.
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!
Chef Andrew Rudd, who has a cookery slot on TV3′s Ireland AM show has joined the fund raising campaign for the Sam McMahon Trust. Andrew, who has been cooking since he was a child has turned his passion for food into a successful company, The Andrew Rudd Food Group. As well as holding cookery classes, they import premium food products including balsamic vinegars and olive oils
Andrew will give a demonstration on May 23rd at 8pm in the Radisson Blu Hotel in Stillorgan. The proceeds will be shared between the Sam McMahon Trust and Loreto National School, Rathfarnham. tickets are available online here and cost €25.
Check out this article in our Useful Information page, that was published in the January 2010 issue of Neurology Now. This is a publication of the American Academy of Neurologists. Although it is not a comprehensive review of all of the research that is going on in the world of FA, it does acknowledge the promising work that is being done by Dr Joel Gottesfeld in the field of HDAC inhibitors.
The Friedreich’s Ataxia Research Alliance (FARA) is fielding a team of four cyclists in the “world’s toughest bicycle race”. The annual transcontinental bicycle Race Across America (RAAM) begins on June 12 2010 in Oceanside, California and finishes in Annapolis, Maryland approximately 9 days later. This race from the west to east coast of the USA is not a stage race but rather a time trial. Athletes from around the world participate in this feat of endurance. Over 215 RAAM competitors will travel more than 3,000 miles with 100,000 vertical feet of climbing at an average minimum speed of 14 mph.
With tickets released only two weeks ago we have been blown away by the fact that today they are all sold out! Huge thanks to all of those who have bought tickets and donated prizes for the raffle. It promises to be a great night out.
Even Sam is brushing up his cookery skills. Watch out Neven!
The Sam McMahon Trust and Friedreich’s Ataxia Research Alliance are to benefit from a cookery demonstration by award-winning chef and restaurateur Neven Maguire in the D4 Berkeley Hotel on 8th March 2010.
Following a drinks reception at 7pm, Neven will demonstrate how to cook some great recipes taken from his new culinary guide and cookbook, “Home Chef”, at 8pm.
Determined to raise the standards of home cooking, Neven Maguire will demonstrate how to transfer his expertise from the restaurant to the domestic kitchen, offering expert advice to both the novice and experienced cook.
The event is sponsored by Menupages.ie and D4hotels.ie.
Tickets, which would make an ideal Valentines gift for a foodie, are priced at just €25 each, and if ordered before 7th February, delivery is guaranteed in time for the big day!
Tickets are available from www.menupages.ie/sam
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.