A new baking book was launched this week in Tesco Stores, Boots and Home Store and More. The book contains fabulous recipes from mums who love to bake. They are straight forward, easy and very tasty. Sponsored by MummyPages all proceeds go to Sam’s trust and Fara Ireland. We are thrilled to be involved in […]
The details for the 6th annual Friedreich’s Ataxia Symposium have been announced. As before the location is Crowne Plaza Valley Forge Hotel at King of Prussia in Philadelphia. There is a ‘Meet & Greet’ on Sunday October 13th and the Symposium takes place on Monday October 14th. For details of the programme or to download […]
Simple things that we all take for granted can be very challenging for a person with a disability. The issue of school trousers is one that we have struggled with in the past weeks. Finding fully elasticated trousers for a young man is next to near impossible. Finding charcoal grey tracksuit bottoms that might pass […]
In the past weeks Sam has had four appointments rescheduled or cancelled. In one case word of the cancellation was conveyed upon arrival at the hospital. In addition Sam is waiting for a review for his wheelchair as it has become uncomfortable and is no longer meeting his physical needs. Progressive diseases don’t wait for […]
Recent studies in the UK have shown that Vitamin B3 raises the protein that is missing in people with FA. Research is still at an early stage and Professor Festenstein who is leading the research has warned against taking B3 until further studies are completed. To read more about the research, click here.
Our Neven Maguire cookery demonstration was a great success. We were delighted with all of the support we received from those that bought tickets and attended the evening. Our sponsors Mummypages coordinated the night and ensured that all ran smoothly. To all of those who continue to support Sam and the events run by the […]
The Wijit is a wheel with a lever drive, gears, and brakes that replaces the wheel on a manual wheelchair. They can be installed on most manual wheelchairs. This device allows the person in the wheelchair to drive, break and stop without touching the wheels. It also improves cardiovascular health which is difficult to achieve with […]
The 2013 National Ataxia Foundation (NAF) annual meeting concluded recently in Detroit, USA. If like us you were unable to attend the meeting, the presentations are available on their website here. Of particular interest is Dr Dave Lynch’s presentation which looks at recent advances in Gene Therapy as well as providing a great overview of […]