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 - DFSGThe 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 2017 Virgin Money London Marathonis on 23rd April 2017. The 2016 marathon was our best ever London Marathon fundraiser and we are looking to exceed the 2016 total of £13,438.38. There are limited places for runners available, please contact DFSG if you are interested in participating
This historic decision would make available on the NHS the first ever drug to treat an underlying genetic cause of Duchenne muscular dystrophy.
In order to give time for NHS England and the drug company, PTC Therapeutics, to agree an final acceptable price, NICE has set July as the date where its recommendation will become final. We’ll then be pushing NHS England to implement this decision in order to get the drug to boys in clinic as quickly as possible. Read More
SKIP-NMD (Skipping exon 53 of the dystrophin gene) PROJECT UPDATEThe SKIP-NMD project was originally funded by a European Union (EU) grant that allowed the completion of the first phase of this first-in-human Phase I/II clinical trial, 4053-101. It was an international project coordinated by Professor Francesco Muntoni of Great Ormond Street Hospital in London, involving a consortium of 10 academic partners across Europe (UK, France, Belgium and Italy) and the US. It also included the involvement of several companies Sarepta Therapeutics, Inc., Consultants for Research and Imaging (CRIS), and SYSNAV (expertise in indoor/outdoor robust navigation and positioning systems) who provided their new advances and techniques in translational Duchenne research, and six patient organizations: Action Duchenne, Association Française contre les Myopathies, Duchenne Family Support Group, Duchenne Parent Project France, Duchenne Parent Project Onlus, and Muscular Dystrophy UK... Read full article >>>
Muscular Dystrophy UK has launched the second edition Adaptations manual: for children and adults living with muscle-wasting conditions. Families regularly approach Muscular Dystrophy UK with questions about the best adaptations to get for themselves and for family members. The second edition of the adaptations manual aims to answer those questions.
In December 2015, eight patient organisations, who are working to help support clinical trial development for Duchenne muscular dystrophy, announced a total of £1.2million of investment, to fund a total of 16 clinical posts. Today we are announcing that TEN of those SIXTEEN posts have now been recruited. The posts are at Great Ormond Street Hospital NHS Foundation Trust in London (GOSH), The John Walton Muscular Dystrophy Research Centre at Newcastle University, University Hospitals Bristol NHS Foundation Trust and Alder Hey Children’s Hospital in Liverpool.
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 .
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...
Demos, an independent think-tank (research charity) based in London, are looking at what support is available across the UK for children and young people with complex disabilities, life-limiting and life-threatening illnesses, and their families. They are collecting evidence and are asking for families affected to complete some surveys.
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...
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...
SKIP-NMD news article | SKIP-NMD a new Duchenne clinical trial starting | The SKIP-NMD website
Pedham Place Golf Centre Charity Golf Day Friday 23rd June 2017 Teams of four. £60 per person 8am Coffee and Bacon Roll 9am Shotgun Start Texas Scramble 2 Course Lunch Try Foot Golf! Prizes Raffle Pedham Place Golf Centre London Road, Swanley, Kent, BR8 8PP In aid of the Duchenne Family Support Group To register by 12th May contact Christina Biggs at events@dfsg.org.uk
There is no Le Fosso Trip planned for 2017 because of demannd but we have bookd the following dates for 2018: 28th May-2nd June 2018
The next DFSG AGM is on Saturday 29 October 2016 at 1pm and will be held at Pedham Place Golf Club in Kent. Come along to informally meet the committee and other families and to share your views and find out more about our Charity. More details to follow.
Over this weekend we are holding a residential remembrance weekend for those families who have lost loved ones to Duchenne. There is no agenda as such, just an opportunity to chill in the peaceful surroundings of Launde Abbey near Leicester and be in the company of others who share experiences.
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!).
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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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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