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.
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.
Holidays and Special Events
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
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.”
Treat NMD are pleased to announce the publication of ‘The Burden of Duchenne muscular dystrophy' international study. Significant hidden costs revealed in international study of Duchenne muscular dystrophy. In the first international study of its kind, researchers have found that there are many different costs accompanying a rare condition such as Duchenne muscular dystrophy (DMD) and that there is a considerable financial burden carried by affected families. The research, published today in the journal Neurology®, was led by Newcastle University (UK) and the Karolinska Institutet (Sweden) and carried out in collaboration with patient registries for DMD in Germany, Italy, the UK and the United States. Funded by GSK, the aim of the study was to estimate the total cost of illness and the economic burden of DMD. More...
Archive of past news items and events. News items are moved here when they have passed but still have content that will be of use to and of interest to our readers.
The launch by MDC of their new campaign, Fast Forward, is aimed at ensuring that treatments for Duchenne and other muscle-wasting conditions can reach patients as quickly as possible. The launch of Fast Forward comes shortly after the European Medicines Agency (EMA) recommended conditional approval to Translarna (formerly known as ataluren), a drug designed to treat the 10 - 15% of boys and young men with Duchenne muscular dystrophy caused by a ‘nonsense mutation’. Interested people are encouraged to write to their MPs and to use social media #FastForward to spread the word.