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 Right to Breathe

Muscular Dystrophy UK's campaign 'The Right To Breathe' was kicked off on BBC Radio Sussex today (Friday 27 February 2015) featuring an interview with DFSG Development Officer Phillippa Farrant along with Nic Bungay, Director of Campaigns, Care and Information at the Muscular Dystrophy Campaign. Listen to the interview here. Acknowledgement and thanks to BBC Radio Sussex.

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

New Muscle Dream programme England V France at Twickenham 20-21 March

New Muscle Dream programme England V France at Twickenham 20-21 March

Muscle Dream Programme RBS 6 NATIONS: ENGLAND V FRANCE. Twickenham: Fri 20th MARCH – Sat 21st MARCH 2015 Incl 1 overnight stay at the London Marriott Hotel Twickenham, at Twickenham Rugby Stadium. NOMINATIONS CAN NOW BE MADE FOR THIS PROGRAMME - DEADLINE FOR ENTRIES - MIDNIGHT FRIDAY 27th FEBRUARY. Email your 150 words to: info@musclehelp.com by FRI 27 FEB. The RBS 6 Nations is about to kick-off – for those that LOVE ALL THINGS RUGBY, this Muscle Dream programme is for you! The Muscle Help Foundation has arranged a number of special surprises to give you a truly memorable rugby experience! Accommodation (fully accessible rooms) will be provided on FRI 20th MARCH at the stylish and modern London Marriott Hotel Twickenham offering superb facilities. The hotel is conveniently located as it is joined to Twickenham Stadium! SAT 21st MARCH is match-day (kick-off 17:00hrs) and our group will be in one of Twickenham’s pitch-side enclosures amidst 82,000 spectators inside the largest dedicated rugby union venue in the world.As part of this programme, all meals and refreshments are included. The charity will make a contribution towards travel costs. More...

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.

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