Dates have recently been announced for the 9th Annual Symposium. This year the Symposium takes place on Monday October 17th at the Crowne Plaza in Valley Forge. For more details about the event you can contact The Children’s Hospital of Philadelphia Continuing Education Department.
Posts in category News
29th February 2016 marks the ninth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries all over the world will hold awareness-raising activities. Friedreich’s Ataxia is a rare disease and we at the Sam McMahon Trust will be marking the day.
Our Open Garden Event will take place on Saturday June 6th from 10am to 4pm this year.The garden can be found at 40 Templeroan Avenue in Knocklyon. We are looking forward to catching up with old friends and meeting new ones. As usual tea, coffee and treats will be served and we will have a selection […]
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 […]
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 […]
The 56th National Ataxia Foundation (NAF) Annual Membership Meeting takes place in Detroit from 15th to 17th March 2013. For further information about the agenda and meetings, click here. Unfortunately we will not be attending but to those of you who are we wish you a safe trip and rewarding experience.