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.
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 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...
Holidays and Special Events
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 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. DFSG are planning a further visit in 2016 and details will be published soon.
Recent News, Articles and Conferences
Demos seeking evidence about young people with complex disabilities, life-limiting and life-threatening illnesses
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.
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: firstname.lastname@example.org 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...
A petition calling for the prescribing of Translarna has been presented to David Cameron at 10 Downing street: A new drug is giving hope to boys in Europe with Duchenne Muscular Dystrophy, but it's not yet been made available on the NHS in the UK. A petition to change that has been signed by thousands of people.See the video and read more here...
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.
Chris Patterson, Laura & Steph's Riding for Richard page on theJust Giving Website has been given a certificate of achievement by Just Giving for being in their top 3% of fundraising pages. More
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 https://www.justgiving.com/Tracyannabrown77/