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.
Join in the 2017 London Marathon fundraiser
The 2017 Virgin Money London Marathonis on 23rd April 2017. The 2016 marathon was our best ever London Marathon fundraiser and we are looking to exceed the 2016 total of £13,438.38. There are limited places for runners available, please contact DFSG if you are interested in participating
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
Eastbourne Steampunk Festival
On the first wekend of September DFSG participated in the Eastbourne 2016 Steampunk Festival run by Eastbourne Bonfire Society. As one of their chosen charities we held a 'Teddy Tombola' and information stall for the whole weekend raising money for and awareness of DFSG.
Eastbourne Bonfire Society Grand Torchlight Procession
Please support Eastbourne Bonfire Society by purchasing a programme of the event at just £1, all proceeds go to putting on this free community and family event for the residents of Eastbourne. This event is paid for solely from the fundraising efforts of the members throughout the year, who give their time for free. Programmes are on sale at the following outlets, who have kindly agreed to do this for free.
Vinyl Frontier in Grove Road
Sumfing Special in Grove Road
Jane De Weck Photography in South Street
Curzon Cinema in Langney Road
7 Ply Skate Store in Langney Road
Cafe North in North Street
Amy's Cafe in Seaside Road
or pick up your copy at the Eastbourne Bonfire membership stall at the Steampunk Festival on the Wish Tower Slope, this coming weekend the 10th and 11th September from 10am to 5pm on both days.