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Give as you Live™? Every purchase you make online can raise funds for DFSG, at no extra cost.Using 'Give as you Live' is a really easy way to help us raise funds for DFSG. Use the link to go shopping and help support DFSG. Some retailers give up to 3% commission and in December 2015 DFSG made £150 from 'Give as you Live'.

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.

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Win a Road Runner Weekend!

Road Runner Motorhomes have donated a long weekend to be raffled in order to raise money for the Duchenne Family Support Group.

The weekend will run from Friday 29th April until the Bank Holiday Monday 2nd May. This long weekend would normally cost £400, but we are giving you a chance to win it for just the cost of a raffle ticket! Find out more...

Recent News, Articles and Conferences

The Newcastle  Plan

The Newcastle Plan

Charities announce £1.2million investment in key clinical posts at leading Neuromuscular Centres for Duchenne Muscular Dystrophy. Eight patient organisations, who are working to eradicate Duchenne Muscular Dystrophy, are funding a total of 16 clinical posts at Great Ormond Street Hospital in London, The John Walton Muscular Dystrophy Research Centre at Newcastle University and Alder Hey Children’s Hospital in Liverpool, to help support clinical trial development for Duchenne Muscular Dystrophy. The DFSG are pleased to be involved with this project and although not supporting financially as this is not in our remit, we are working closely with all of the charities in a n advisory capacity .

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.

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...

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


Holidays and Special Events

DFSG UK Holiday to Norfolk Broads

DFSG UK Holiday to Norfolk Broads

DFSG are really excited to let families know that we are able to offer a second holiday for families in 2016. We have booked Hall farm cottages in Norfolk which are self catering and accessible for our families. We have been there in the past and had great times. At the moment I am working on costings and will let you all know shortly but the dates are 27th August- 3rd September 2016. Watch this space and facebook for more details.

Le Fosso Trip 2016

Le Fosso Trip 2016

Currently this year's holiday is Fully Booked but you can approach us to go on the waiting list for cancellations.The dates are 28 May to 4 June 2016. Enquiries to info@dfsg.org.uk Visit the Le Fosso 2016 Page

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Review of 2015 trip to Le Fosso in Brittany by Penny Bailey

This is the second year that we attended the trip to Le Fosso with DFSG and what a week we had! Fantastic weather, meeting up with familiar faces and enjoying the hospitality of Mike and Hilary (oh, and yes, catching up with the animals!).

Read more...

Willow Foundation

Willow is the only national charity working with seriously ill young adults aged 16 to 40 to fulfill uplifting and unforgettable Special Days that enable them and their families to reconnect and refocus on each other while enjoying an activity of their choosing. A day that will create memories they will all treasure forever. - See more at: www.willowfoundation.org.uk


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Holiday News

Wheelchair Accessible Motorhome

Fully wheelchair accessible motorhome

Road Runner Motorhomes is a family run, Community Interest Company (CIC), offering disabled people the opportunity to hire a specially equipped, fully wheelchair accessible motorhome at affordable rates. Their aim is to make going on holiday both accessible and achievable for those with a disabled family member. The 4 berth motorhome features: entry via an electrically operated cassette wheelchair lift, a four point wheelchair tie-down system, a profiling bed, an overhead hoist with tracking from the profiling bed to a wet room and a 240 volt inverter to charge a wheelchair and/or run a Bi PAP.

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