Website and Blog for the Sam McMahon Trust

Today Sam had his first therapeutic horse riding lesson. Accompanied by his older brother Ben, both boys had their first experience of sitting on a horse. We were all a little nervous, especially when we saw the size of the horses up close but once they were in the saddle everyone began to relax. They learned how to make the horses start, stop and turn left and right. With two girls guiding the horses and Anna, the coach giving instructions the boys soon relaxed. As Ben learned to lean forward, Sam was encouraged to balance without holding on and to twist and wave.  The time went by so quickly that there were two disappointed faces when Anna said ‘That’s it’. On our way out I was reminded to book for next week!!

Therapeutic horse riding is beneficial for people with special needs. It develops muscle strength, balance and co-ordination. It is also helpful for posture and works on tight muscles. A great work out without realising it!  On top of that was the feeling of success and well being that comes with achieving results.

We took our lessons at the Festina Lente, the name means hasten slowly in Latin. It is a non-profit charity and works to provide a range of  training, occupational, learning and employment opportunities for people whose needs are not being met in the mainstream services.

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.

February 28th 2010 marks Rare Disease Day in Ireland. The main objective of the day is to raise awareness with policy makers and the public of rare diseases and the impact that they have on patients’ lives.The Genetic and Rare Disorders Organisation are celebrating this day in the Mansion House in Dublin from 11am to 1pm. Families and those interested in hearing about the supports available to those who have rare diseases in Ireland are welcome, and  children who come along with parents, will be able to attend music workshops and have face-painting done.

There will be over 20 organisations present to provide  information on support and incentives that are underway on the national and international stage. The event will be hosted by the Lord Mayor of Dublin Councillor Eibhlin Byrne.

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!

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 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 8^th 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 7^th 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.

Ataxia UK have recently updated their Clinical Guidelines for Best Practice for healthcare professionals on the diagnosis and management of progressive ataxias. Although some of the details are, at times, technical and not all of the information relates to Friedreich’s Ataxia, there is no doubt that the Guidelines provide us with a huge amount of up-to-date information that can be printed off and brought to healthcare professionals.The Guidelines include details about diagnosis, medical interventions, disease modifying treatments, therapies and research. Read the Guidelines here.