Using 'Give as you Live' is a really easy way to help us raise funds for DFSG. Use the link to go shopping and help support DFSG. Some retailers give up to 3% commission and in December 2015 DFSG made £150 from 'Give as you Live'.
The Duchenne Family Support Group - DFSG
The Duchenne Family Support Group (DFSG) exists to provide support for families with children diagnosed as having Duchenne Muscular Dystrophy (DMD).
The DFSG is a national charity run by families for families affected by DMD. It provides a positive national support network of parents, their families and professionals.
The DFSG helps bring families together for mutual support, sharing of information and experience, and social activities and has been doing so since 1987.
The DFSG magazine 'Duchenne News' August 2016 edition is available now. Click the image to view as a pdf.
2016 our best ever London Marathon fundraiser
The 2016 Virgin Money London Marathon has to be our best ever London Marathon fundraiser. At time of writing (the day after the Marathon ) our runners have raised £13,438.38 including Gift Aid. We would like to congratulate Matt Bough,Karly Jose, Hanna Jenvey,Michelle Lyall, Steph Patterson and Tre Anna Rouco for their achievement in completing the London Marathon and thank them for the massive commitment they have made in both time and effort.
Bewl Water Sailing Day Confirmed for 9th July 2016
Our annual sailing day, picnic, barbecue and an accessible boat courtesy of the Mariners of Bewl and the Wheelie Boat Trust on 9th July 2016 has been confirmed. Please keep this date in your diaries and let us know if you would like to come along. More details as we have them...
NICE has recommended funding on the NHS in England for Translarna.
This historic decision would make available on the NHS the first ever drug to treat an underlying genetic cause of Duchenne muscular dystrophy.
Translarna would treat boys whose Duchenne is caused by a nonsense mutation, who are aged five years and over and who are still able to walk.
In order to give time for NHS England and the drug company, PTC Therapeutics, to agree an final acceptable price, NICE has set July as the date where its recommendation will become final. We’ll then be pushing NHS England to implement this decision in order to get the drug to boys in clinic as quickly as possible. Read More