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.

SKIP-NMD – a new Duchenne clinical trial starting

SKIP-NMD is funded by the European Seventh Framework Programme FP7 and involves research institutions and muscle centres from France, Italy and the UK.  The aim of the consortium is to carry out a new clinical trial to test a molecular patch for exon 53. This is to restore dystrophin production in a subset of boys with Duchenne muscular dystrophy, in particular those with a deletion (a mutation where part of the dystrophin gene is missing) spanning exons 52, 45-52, 47-52, 48-52, 49-52 and 50-52. Read More...

SKIP-NMD news article | SKIP-NMD a new Duchenne clinical trial starting | The SKIP-NMD website


Holidays and Special Events

Stix Summer Madness 2015 in support of DFSG

Stix Summer Madness 2015 in support of DFSG

Eastbourne drumming group 'Stix' are holding their annual 'Summer Madness' event at Sharnfold's Farm, Stone Cross on Saturday 27th June. A fun and festive day full of drumming, belly dancing, fire acts and more. Proceeds in aid of DFSG.

Trip to Le Fosso, Brittany 2015

Trip to Le Fosso, Brittany 2015

English hosts at Le Fosso, have booked us in for another week for next year at their wheelchair accessible accommodation in Brittany, France, near the city of Rennes. Full details can be found on their website http://www.lefosso.com. Le Fosso is fully accessible and equipment such as hoists or electric beds can be hired in locally at your own expense. Please ask for a quotation. Each family will be responsible for their own travel arrangements. Just go to http://www.lefosso.com and look at their travel links. The Brittany Ferries discount offer on the information sheet is for 25% off ferry bookings made before the end of October. After that it then returns to 20%. Also here is the link for Eurotunnel, which is quick and easy for wheelchair users. http://www.eurotunnel.com

Recent News, Articles and Conferences

SKIP-NMD – a new Duchenne clinical trial starting

SKIP-NMD – a new Duchenne clinical trial starting

A new clinical trial to test a molecular patch skipping exon 53 in boys with Duchenne Muscular Dystrophy is starting. The molecular patch could potentially be used to restore dystrophin production in about eight percent of boys with Duchenne muscular dystrophy.

Social and sexual needs of men with long-term conditions

Social and sexual needs of men with long-term conditions

Norah Fry Research Centre at the School for Policy Studies NIHR School for Social Care Research at the University of Bristol have completed a study into the social and sexual needs of men with disabilities. The project was undertaken with the support and involvement of the DFSG. Researchers looked at the views of 20 men, aged from 21 to 33, who have Duchenne muscular dystrophy. The study reveals that men sometimes found that social care took no account of their male gender and they wanted more support with social activities and sexual relationships. One participant said: “I think the actual impact of social care can be incredibly emasculating, if it is set up in such a way that it takes away your independence and your autonomy. It's not even gender neutral, because gender's not even in there.”

Website by: Commotion