Sam McMahon Trust

One year on….

caroline — Sat, 04 Sep 2010 19:59:59 +0000

This month our website is one year old. With posts on clinical trials, symposiums and living with FA we hope that we have raised awareness about and helped people to understand Friedreich’s Ataxia. Fighting to find treatments and a cure for a rare disease is a terribly difficult task. Watching a disease march on and take its toll is soul destroying. But that’s the path we’re on and we will march on.

Thanks for your support. We appreciate the comments and emails so don’t stop.

At present Sam is holding his own. He continues to be a happy contented young man, who knows what makes him happy. He is has decided to grow his hair and so looks a bit like Julius Caesar (according to Margaret Lawless!!) at the moment. He wears his hoodie when it’s hot outside and has said that he will take it off when it’s cold! His goreous smile and his ability to take things in his stride make him a pleasure to be around.

CURE FA!!!

‘Cultivating a Cure’ Symposium participants optimistic about finding a treatmant for FA

caroline — Tue, 31 Aug 2010 18:15:00 +0000

Hosted by the Friedreich’s Ataxia Research Alliance (FARA) and the USF Ataxia Research Centre the second annual Scientific Research Symposium drew scientists, clinicians, experts from across many countries. In the last ten years significant advances have been made in coming to an understanding of the molecular mechanisms of Friedreich’s Ataxia. It is exciting to note that more than a dozen drugs are in the clinical trial pipeline.

For more details on the expert speakers and the and the scientific advancements, and the patients who participated at the symposium, click here.

Euro-Ataxia Scientific Meeting 2010

caroline — Mon, 23 Aug 2010 18:34:12 +0000

The 2010 Euro-Ataxia Scientific Meeting will take place from the 1st to the 3rd of October in Cervia, Italy. If you are interested in attending the meeting then click here for the reservation form. Cervia is close to Rimini and is served by nearby airports Rimini and Forli.

Accomodation, full board and conferences cost €220 and reservation forms should be returned by August 27th.

Back to School

caroline — Mon, 16 Aug 2010 14:35:27 +0000

It’s that time of year when we are all involved in making preparations for going back to school. Changing classes, meeting new friends and teachers and getting used to the challenges of a new year can take a couple of weeks to adjust to.

Last year Sam’s mum, along with the Special Education Support Service (SESS), put together guidelines for teaching students with FA. It would be a mistake to assume that your son/daughter’s teacher has seen them. You can print them off here. They will be of benefit to you and to all of those people in the school environment who come into contact with your child. In fact you should keep a copy for yourself. By helping people to understand, you will be helping your child and raising awareness about FA.

King of Greystones Triathlon 2010

caroline — Fri, 06 Aug 2010 16:22:57 +0000

Best wishes and good luck to all of the competitors taking part in the King of Greystones Triathlon tomorrow. We hope that the weeks and months of training pay off! It promises to be a great event. Thanks to all of those people who have volunteered their time to ensure that everything goes smoothly.

Current & Emerging Options for treating FA

caroline — Sat, 31 Jul 2010 10:33:53 +0000

A comprehensive article published in Dove Press Journal: Neuropsychiatric Disease and Treatment examines the current and emerging treatment options for the management of Friedreich’s Ataxia. Many current approaches are reviewed and possible future treatments are documented. The article does conclude that available evidence suggests that those with FA should be treated with Idebenone but that further clincial trials are needed. To read the article click here.

King of Greystones Triathlon 2010

caroline — Fri, 23 Jul 2010 11:55:12 +0000

This year the King of Greystones Triathlon takes place on Saturday August 7th. With a 750m swim, 20km cycle and 5k run you need to need to be reasonably fit to compete. But you don’t need to have any special training to help out. We need helpers to direct competitors and give out water from 9am til lunch time.

You will receive a King of Greystones T-shirt, a goodie bag, free BBQ and entry to the Koo that evening .

If you can help us out then please contact: Aisling (Aisling@yourleadbuddy.com) or Shane (Shane_McKenna@dell.com)

As The Sam McMahon Trust will benefit from this year’s event we will be out in force to support the Triathlon. Will we see you there?

Ordering Idebenone

caroline — Wed, 21 Jul 2010 15:15:29 +0000

If you are ordering Idebenone from Kirkman Labs in the United States then it’s worth your while registering to become part of the ‘Kirkman Family‘ on the home page of their site. They will email their newsletter to you every month and it contains a code which will give you a discount off their products. The most recent offer gave 15% off orders over $100. You can check out the Kirkman Labs site here.

You should always seek medical advice before embarking on a course of treatment.

Friedreich’s Ataxia Symposium 2010

caroline — Wed, 14 Jul 2010 13:38:06 +0000

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.

Euro-Ataxia Newsletter

caroline — Tue, 13 Jul 2010 12:45:24 +0000

The latest Euro-Ataxia Newsletter is available here. It includes information on the latest research on a number of ataxias, articles on cardiomyopathy and speech problems and news from Eurodis. There is also an article on the the second FA Symposium held last November in Philadelphia. Dr. Mary Kearney is responsible for editing and producing this comprehensive newsletter. Thanks Mary!