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 London Marathon
The 2017 Virgin Money London Marathon took place on 23rd April 2017. £10,630 was raised through the efforts of our runners for which we say a heartfelt 'thank you'. The previous 2016 marathon was our best ever London Marathon fundraiser and we are looking to exceed both these totals in 2018 when the marathon is scheduled for 22nd April 2018. 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
The SKIP-NMD project was originally funded by a European Union (EU) grant that allowed the completion of the first phase of this first-in-human Phase I/II clinical trial, 4053-101. It was an international project coordinated by Professor Francesco Muntoni of Great Ormond Street Hospital in London, involving a consortium of 10 academic partners across Europe (UK, France, Belgium and Italy) and the US. It also included the involvement of several companies Sarepta Therapeutics, Inc., Consultants for Research and Imaging (CRIS), and SYSNAV (expertise in indoor/outdoor robust navigation and positioning systems) who provided their new advances and techniques in translational Duchenne research, and six patient organizations: Action Duchenne, Association Française contre les Myopathies, Duchenne Family Support Group, Duchenne Parent Project France, Duchenne Parent Project Onlus, and Muscular Dystrophy UK... Read full article >>>