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.
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...
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
A petition calling for the prescribing of Translarna has been presented to David Cameron at 10 Downing street: A new drug is giving hope to boys in Europe with Duchenne Muscular Dystrophy, but it's not yet been made available on the NHS in the UK. A petition to change that has been signed by thousands of people.See the video and read more here...
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.
Chris Patterson, Laura & Steph's Riding for Richard page on theJust Giving Website has been given a certificate of achievement by Just Giving for being in their top 3% of fundraising pages. More
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.”