news-2.jpg

Read current news here...

News Archive -
Look up past news items

recent-twitter.pngDFSG on Twitter

Follow us @DuchenneFSG

 

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'.

Duchenne News August 2016The 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 DFSG magazine 'Duchenne News' August 2016 edition is available now. Click the image to view as a pdf.

Join in the 2017 London Marathon fundraiser

virgin-money-london-marathon-logo.jpg

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

 

NICE has recommended funding on the NHS in England for Translarna.

This historic decision would make available on the NHS the first ever drug to treat an underlying genetic cause of Duchenne muscular dystrophy.

Translarna would treat boys whose Duchenne is caused by a nonsense mutation, who are aged five years and over and who are still able to walk.

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

Eastbourne Steampunk Festival

On the first wekend of September DFSG participated in the Eastbourne 2016 Steampunk Festival run by Eastbourne Bonfire Society. As one of their chosen charities we held a 'Teddy Tombola' and information stall for the whole weekend raising money for and awareness of DFSG.

eb3.jpgeb2.jpgeb1.jpg

 

 

ebs-torchlight.jpg

Eastbourne Bonfire Society Grand Torchlight Procession

Please support Eastbourne Bonfire Society by purchasing a programme of the event at just £1, all proceeds go to putting on this free community and family event for the residents of Eastbourne. This event is paid for solely from the fundraising efforts of the members throughout the year, who give their time for free. Programmes are on sale at the following outlets, who have kindly agreed to do this for free.
Vinyl Frontier in Grove Road
Sumfing Special in Grove Road
Jane De Weck Photography in South Street
Curzon Cinema in Langney Road
7 Ply Skate Store in Langney Road
Cafe North in North Street
Amy's Cafe in Seaside Road
or pick up your copy at the Eastbourne Bonfire membership stall at the Steampunk Festival on the Wish Tower Slope, this coming weekend the 10th and 11th September from 10am to 5pm on both days.

Recent News, Articles and Conferences

TEN POSTS IN PLACE TO SUPPORT UK CLINICAL TRIAL CAPACITY

TEN POSTS IN PLACE TO SUPPORT UK CLINICAL TRIAL CAPACITY

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.

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 .

NICE has recommended funding on the NHS in England for Translarna.

NICE has recommended funding on the NHS in England for Translarna.

NICE has recommended funding on the NHS in England for Translarna. This historic decision would make available on the NHS the first ever drug to treat an underlying genetic cause of Duchenne muscular dystrophy. Translarna would treat boys whose Duchenne is caused by a nonsense mutation, who are aged five years and over and who are still able to walk. 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.

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

2018 visit To Le Fosso France

2018 visit To Le Fosso France

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

DFSG AGM Saturday 29 October 2016

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.

Remembrance Weekend November 12-13 November 2016

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.

fosso.png

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


Living with DMD

recently-diagnosed.jpgRecently
Diagnosed?

Get help, advice
and support

 

Listening Books

 

nmc_advert_170.jpgwww.nmcentre.com
Download PDF

 

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.
Download the leaflet>>