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 reports progress on skipping exon 53

Encouraging results on the successful completion of the first part of a clinical trial to skip exon 53 in boys with Duchenne muscular dystrophy have been reported at the SKIP-NMD Consortium meeting that took place in Sardinia from the 24-25 June 2015. Full report published here...

Download the pdf

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

Holidays and Special Events

Trip to ‘Le Fosso’ in Brittany June 2016

Trip to ‘Le Fosso’ in Brittany June 2016

We are delighted to announce that following our families and friends efforts in fund-raising in the past few months we can, once again, offer the holiday to Le Fosso, in Brittany, France. Our English hosts, Michael and Hilary Townsend, have booked us in for another week next year at their accommodation near the city of Rennes. Full details can be found on their website. Le Fosso is fully wheelchair-accessible and equipment such as hoists or electric beds can be hired locally. Read more... Download Application Form

Road Runner Homes

Road Runner Homes

We have had an excellent few months with the motorhome travelling as far afield as France, Belgium and The Netherlands. July and August were very busy, but we now find we have some last minute availability in September and October. If you book now quoting “Autumn Newsletter” I can offer you a discount of £150 from the advertised price of £750 to only £600 for a week away in the motorhome this September or October. That’s a further £50 off the web price! And that includes half term week! But please do book early to avoid disappointment! Our other Winter Special Offers are already on the website, giving everyone a chance to grab a week or a long weekend away from as little as £195. So if you fancy seeing friends or family for a pre Christmas get together, check out our website on: And remember, 10% of the hire fee goes to the DFSG! I look forward to hearing from you. Sue Berry

Stix Summer Madness 2015 in support of DFSG

Stix Summer Madness 2015 in support of DFSG

Eastbourne drumming group 'Stix' held 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 were enjoyed along with a set by Sussex function band The Review. £1000 was raised for DFSG and a similar amount for Eastbourne Food Bank.

Trip to Le Fosso, Brittany 2015

Trip to Le Fosso, Brittany 2015

DFSG members and families enjoyed another week this year at the wheelchair accessible Le Fosso in Brittany, France, near the city of Rennes. Full details can be found on their website Le Fosso is fully accessible and equipment such as hoists or electric beds can be hired in locally at your own expense. DFSG are planning a further visit in 2016 and details will be published soon.

Recent News, Articles and Conferences

Tracy Brown Fundraising for DFSG

Tracy Brown is fundraising for DFSG

Tracy Brown is fundraising for DFSG. She didn't know anything about Duchenne Muscular Dystrophy until her friend Michelle Lyall told her about her wonderful son Dan. Once Tracy heard she wanted to do something to help. Michelle suggested DFSG as a charity that would benefit the most.
Tracy has a jJust Giving page at

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