Action Duchenne News RSS Feed http://www.actionduchenne.org/news The news feed from Action Duchenne Copyright(c) 2012 Action Duchenne en http://www.actionduchenne.org Mon, 21 May 2012 17:50:35 BST Bumper weekend in the North West!!!!!! Fantastic charity ball- a big thank you to the Mooney's!! http://www.actionduchenne.org/viewarticle?news=367 Mon, 21 May 2012 00:00:00 BST Action Duchenne wins Good Cause Award!! Bettys Tea Room in York donates community award to Action Duchenne http://www.actionduchenne.org/viewarticle?news=366 Fri, 18 May 2012 00:00:00 BST 2012 Belfast City Marathon makes history for Action Duchenne 63 determined supporters braved winter conditions to help raise over £16,000 http://www.actionduchenne.org/viewarticle?news=365 Tue, 8 May 2012 00:00:00 BST Martin Bashir talks about his brother Tommy in The Guardian today Pick your copy today http://www.actionduchenne.org/viewarticle?news=364 Mon, 7 May 2012 00:00:00 BST End of season Score4Duchenne Support Action Duchenne back at Dens Park for last game of the season http://www.actionduchenne.org/viewarticle?news=363 Sat, 5 May 2012 00:00:00 BST Young dancers help support Action Duchenne over 2 night shows. McGuiness School of Irish Dancing help raise £1,300 for Action Duchenne. http://www.actionduchenne.org/viewarticle?news=362 Fri, 4 May 2012 00:00:00 BST Latest newsletter out - Issue 11 Action Duchenne's latest newsletter now available to read online http://www.actionduchenne.org/viewarticle?news=361 Thu, 3 May 2012 00:00:00 BST Manchester City Reddish Blues Supporters Club stages ‘Reddish Got Talent’ fundraiser All proceeds go to Action Duchenne, Manchester City Supporters’ charity of the year http://www.actionduchenne.org/viewarticle?news=360 Wed, 2 May 2012 00:00:00 BST Martin Bashir, a new Patron for Action Duchenne features in Daily Express Today Newsman Martin Bashir talks about his brother Tommy's fight with Duchenne http://www.actionduchenne.org/viewarticle?news=358 Tue, 1 May 2012 00:00:00 BST Martin Bashir becomes patron of Action Duchenne, the Duchenne Muscular Dystrophy Charity Award-winning journalist supports Action Duchenne – the only UK charity that campaigns solely for treatments, research and improved standards of care for sufferers of Duchenne Muscular Dystrophy, a devastating, life limiting illness http://www.actionduchenne.org/viewarticle?news=359 Tue, 1 May 2012 00:00:00 BST Terry Byrne's '333 Challenge' Supporter runs 333km in the 30 days of April (despite the weather!) http://www.actionduchenne.org/viewarticle?news=357 Mon, 30 Apr 2012 00:00:00 BST Summit announces approval for Phase 1 Clinical trial Approval for human trial for reformulated utrophin upregulation drug http://www.actionduchenne.org/viewarticle?news=356 Fri, 27 Apr 2012 00:00:00 BST Well done to all Action Duchenne London Marathon Runners Great results all round! http://www.actionduchenne.org/viewarticle?news=355 Thu, 26 Apr 2012 00:00:00 BST Action Duchenne supporters take their marks at the Belfast City Marathon 63-strong team clubs together to raise funds for charity http://www.actionduchenne.org/viewarticle?news=354 Wed, 25 Apr 2012 00:00:00 BST Action Duchenne: National Meeting Families, clinicians and staff gather in Birmingham for a day of discussion and planning. http://www.actionduchenne.org/viewarticle?news=353 Tue, 24 Apr 2012 00:00:00 BST Power cut at Head Office If you are trying to get hold of you can get hold of Kelly on 07795811176 http://www.actionduchenne.org/viewarticle?news=352 Wed, 18 Apr 2012 00:00:00 BST Eminent leaders in Duchenne research Prof Francesco Muntoni and Prof Matthew Wood talk to Action Duchenne about latest trial results from AVI Action Duchenne supports further UK trials http://www.actionduchenne.org/viewarticle?news=351 Sat, 7 Apr 2012 00:00:00 BST Families And Supporters Unite To Make History Northern Ireland parents and supporters helping make a difference http://www.actionduchenne.org/viewarticle?news=350 Fri, 6 Apr 2012 00:00:00 BST Latest trial update from AVI BioPharma AVI BioPharma Announces Eteplirsen Meets Primary Endpoint, Demonstrating a Significant Increase in Dystrophin at 24 Weeks Compared to Placebo in Phase IIb Trial for the Treatment of Duchenne Muscular Dystrophy http://www.actionduchenne.org/viewarticle?news=349 Thu, 5 Apr 2012 00:00:00 BST Trustee Jon Hastie talks about his film on channel 4 news Trustee Jon Hastie talks about his film A Life Worth Living on channel 4 news http://www.actionduchenne.org/viewarticle?news=348 Tue, 3 Apr 2012 00:00:00 BST Duchenne Alliance holds ground breaking meeting on Duchenne Muscular Dystrophy Alliance ignites revolution in Biomedical funding http://www.actionduchenne.org/viewarticle?news=347 Wed, 28 Mar 2012 00:00:00 BST Prosensa exon skipping Clinical Trial Update Prosensa confirms further developments of their exon skipping programme http://www.actionduchenne.org/viewarticle?news=345 Mon, 26 Mar 2012 00:00:00 BST Get your school to attend Duchenne Learning and Behaviour Day London May 3 Decipha Training Day for Professionals http://www.actionduchenne.org/viewarticle?news=346 Mon, 26 Mar 2012 00:00:00 BST Northern Ireland families featured on BBC NI 'In your Corner' Show calls for better care for all living with Muscular Dystrophy http://www.actionduchenne.org/viewarticle?news=343 Tue, 20 Mar 2012 00:00:00 GMT Glenrothes branch of Virgin Media holds Disney Day to raise funds for Action Duchenne Fun themed day in March is part of 2012 charity programme to raise money and awareness for chosen charities Action Duchenne and Maggie's Cancer Care centre http://www.actionduchenne.org/viewarticle?news=344 Tue, 20 Mar 2012 00:00:00 GMT Love cycling and football then get involved!!!! Premiership Pedlathon- May the force be with Steve Moran! http://www.actionduchenne.org/viewarticle?news=342 Fri, 16 Mar 2012 00:00:00 GMT Action Duchenne's Seeds of Hope Appeal set to blossom for the third successive year National sunflower campaign encourages children to learn about the environment and growing plants while raising awareness and funds for charity Action Duchenne http://www.actionduchenne.org/viewarticle?news=338 Wed, 14 Mar 2012 00:00:00 GMT McCain Foods donation- thank you! McCain Foods Community Fund donation http://www.actionduchenne.org/viewarticle?news=340 Wed, 14 Mar 2012 00:00:00 GMT Oadby Owls Football Club selects Action Duchenne as Charity of the Year £10,000 Fundraising Target set for 2012 http://www.actionduchenne.org/viewarticle?news=336 Tue, 13 Mar 2012 00:00:00 GMT BBC Northern Ireland information request Calling on families in Ireland for support http://www.actionduchenne.org/viewarticle?news=337 Tue, 13 Mar 2012 00:00:00 GMT Saturday was fantastic- thank you! Action Duchenne- Manchester LOVE RUN 10th March http://www.actionduchenne.org/viewarticle?news=335 Mon, 12 Mar 2012 00:00:00 GMT North East parent and auntie step up to the challenge with great media coverage this weekend. China and Kilimanjaro Trek support highlighted http://www.actionduchenne.org/viewarticle?news=333 Fri, 9 Mar 2012 00:00:00 GMT Action Duchenne supports ground-breaking project at the Royal Holloway, University of London Action Duchenne donates £160k to develop breakthrough cure http://www.actionduchenne.org/viewarticle?news=334 Fri, 9 Mar 2012 00:00:00 GMT Kathryn overcomes fear of flying to reach the top of Mount Kilimanjaro! Climb of a lifetime marks pinnacle of fundraising efforts for local Mum http://www.actionduchenne.org/viewarticle?news=330 Wed, 29 Feb 2012 00:00:00 GMT Counterfeit medications - the Elephant in the Room Latest research review draws attention to an important study on counterfeit medications http://www.actionduchenne.org/viewarticle?news=332 Wed, 29 Feb 2012 00:00:00 GMT Action Duchenne London Love Run 2012 Fun, sun and some serious running! http://www.actionduchenne.org/viewarticle?news=329 Tue, 28 Feb 2012 00:00:00 GMT Motion in Scottish Parliament for Action Duchenne MSP's looking to Rock 'n' Roll http://www.actionduchenne.org/viewarticle?news=326 Mon, 27 Feb 2012 00:00:00 GMT All Party Group on Muscular Dystrophy Inquiry session: ‘Commissioning, planning and delivering a specialist neuromuscular service in Northern Ireland Final meeting prior to All Party Group producing recommendations report http://www.actionduchenne.org/viewarticle?news=327 Mon, 27 Feb 2012 00:00:00 GMT Trouble with Reading? Mum Can Help Article about Include Duchenne and Decipha now online http://www.actionduchenne.org/viewarticle?news=325 Thu, 23 Feb 2012 00:00:00 GMT RSS Feed Live Helping to spread the word http://www.actionduchenne.org/viewarticle?news=324 Wed, 22 Feb 2012 00:00:00 GMT Read all about it - Today in the Daily Telegraph Article about Decipha and how it helps Duchenne children with their reading http://www.actionduchenne.org/viewarticle?news=323 Sat, 18 Feb 2012 00:00:00 GMT SUMMIT OUTLINES CLINICAL TRIAL PLANS FOR ITS DUCHENNE MUSCULAR DYSTROPHY PROGRAMME Clinical trial in Q1 2012 http://www.actionduchenne.org/viewarticle?news=321 Tue, 14 Feb 2012 00:00:00 GMT Ataluren update Update issued by PTC Therapeutics on its open-label study outside North America http://www.actionduchenne.org/viewarticle?news=322 Tue, 14 Feb 2012 00:00:00 GMT National Nursery Pledges Support For Action Duchenne Rascals Day Nurseries Donation http://www.actionduchenne.org/viewarticle?news=320 Mon, 13 Feb 2012 00:00:00 GMT London Love Run Postponed Freezing conditions and ice on the course at Finsbury Park. http://www.actionduchenne.org/viewarticle?news=310 Fri, 10 Feb 2012 00:00:00 GMT Action Duchenne Love Runs 2012 London, Cardiff and Manchester Love Runs are still going ahead http://www.actionduchenne.org/viewarticle?news=308 Thu, 9 Feb 2012 00:00:00 GMT Northern Ireland and Scottish Lobbying Update Focus on Care Advisor Roles in Northern Ireland and Scotland http://www.actionduchenne.org/viewarticle?news=309 Thu, 9 Feb 2012 00:00:00 GMT Calling all young people with Duchenne aged 14 – 19 years! Action Duchenne's new Transition Project http://www.actionduchenne.org/viewarticle?news=306 Wed, 8 Feb 2012 00:00:00 GMT Come and see Shrek the Musical with us for a fiver! Action Duchenne goes to the Theatre http://www.actionduchenne.org/viewarticle?news=307 Wed, 8 Feb 2012 00:00:00 GMT Great Pictures Needed! Do you have some snaps that we can use on our promotional and fundraising materials? http://www.actionduchenne.org/viewarticle?news=305 Tue, 7 Feb 2012 00:00:00 GMT Action Duchenne joins healthcare professionals in opposing Health and Social Care Bill Charity claims proposals will seriously affect current standards of care for people with life threatening neuromuscular conditions http://www.actionduchenne.org/viewarticle?news=303 Tue, 31 Jan 2012 00:00:00 GMT Free and highly subsidised days out in London Shape Arts has tickets and drivers to make sure you have a good day out http://www.actionduchenne.org/viewarticle?news=304 Tue, 31 Jan 2012 00:00:00 GMT Making a mark in Northern Ireland Parents receive overwhelming support! http://www.actionduchenne.org/viewarticle?news=301 Fri, 27 Jan 2012 00:00:00 GMT First Data choose Action Duchenne as Charity of the Year The Nottingham based company will support AD throughout 2012 http://www.actionduchenne.org/viewarticle?news=300 Fri, 20 Jan 2012 00:00:00 GMT National Meeting - April 21st in Birmingham Book now for our one day free conference http://www.actionduchenne.org/viewarticle?news=298 Tue, 17 Jan 2012 00:00:00 GMT Grandparents collection tin surprise! North East grandparents gain more support than expected. http://www.actionduchenne.org/viewarticle?news=297 Mon, 16 Jan 2012 00:00:00 GMT Making steps climbing to help Action Duchenne. North East families determined to make a difference. http://www.actionduchenne.org/viewarticle?news=296 Sun, 15 Jan 2012 00:00:00 GMT Charity of the Year with Virgin Media Virgin Media branch in Scotland supports Action Duchenne http://www.actionduchenne.org/viewarticle?news=295 Thu, 12 Jan 2012 00:00:00 GMT Hallam family and friends raise over £10,000 for Action Duchenne in 2011 A variety of events raise a great total! http://www.actionduchenne.org/viewarticle?news=294 Wed, 11 Jan 2012 00:00:00 GMT Splashing Dook and Bag Pack Success Scottish families and supporters help raise £3,000 over New Year! http://www.actionduchenne.org/viewarticle?news=292 Tue, 3 Jan 2012 00:00:00 GMT Carl ‘Action’ Tilson to be one of the Olympic Torch Bearers in 2012 Seasoned campaigner for Action Duchenne gains yet another accolade http://www.actionduchenne.org/viewarticle?news=293 Tue, 3 Jan 2012 00:00:00 GMT Action Duchenne patron honoured with CBE Helena Bonham Carter receives award in New Years Honours http://www.actionduchenne.org/viewarticle?news=290 Sat, 31 Dec 2011 00:00:00 GMT Overwhelming Score4Duchenne Support Dundee FC helps raise awareness and support Action Duchenne. http://www.actionduchenne.org/viewarticle?news=291 Sat, 31 Dec 2011 00:00:00 GMT Annual Raffle Draw winners- well done!!!! Thank you for taking part http://www.actionduchenne.org/viewarticle?news=289 Thu, 22 Dec 2011 00:00:00 GMT Text santa this Christmas! Christmas text campaign http://www.actionduchenne.org/viewarticle?news=288 Wed, 21 Dec 2011 00:00:00 GMT Help Santa deliver his toys and support Action Duchenne with new Christmassy iPhone & iPad App from Rantmedia Download Santa’s Sleigh Ride, enjoy the fun and 15% of proceeds go to Action Duchenne from http://itunes.apple.com/gb/app/santas-sleigh-ride/id477668167 http://www.actionduchenne.org/viewarticle?news=284 Thu, 15 Dec 2011 00:00:00 GMT Sian Lang and Friends hold coffee morning raising £155.75 Sian Lang and Friends hold coffee morning raising £155.75 http://www.actionduchenne.org/viewarticle?news=285 Thu, 15 Dec 2011 00:00:00 GMT Prosensa Updates on Patent Position Prosensa confirms patents for exon skipping http://www.actionduchenne.org/viewarticle?news=283 Fri, 9 Dec 2011 00:00:00 GMT J E Network website contract ACP and J E Network both helping to support Action Duchenne http://www.actionduchenne.org/viewarticle?news=282 Tue, 6 Dec 2011 00:00:00 GMT Upwood Village Cambridgeshire Summer Ball Raise £500 for Action Duchenne Upwood Village Summer Ball Raise £500 for Action Duchenne http://www.actionduchenne.org/viewarticle?news=280 Mon, 5 Dec 2011 00:00:00 GMT Esther, Colin Mayes and their team Raise £2180.74 from11collection days this year Esther, Colin Mayes and their team Raise £2180.74 from 11collection days this year http://www.actionduchenne.org/viewarticle?news=281 Mon, 5 Dec 2011 00:00:00 GMT Prosensa to Receive $1.5m from Charley’s Fund Skipping of Exon 52 in Duchenne Muscular Dystrophy Patients http://www.actionduchenne.org/viewarticle?news=279 Fri, 2 Dec 2011 00:00:00 GMT Ataluren update from PTC Therapeutics Open-label trial confirmed for those who participated in Phase 2b trial http://www.actionduchenne.org/viewarticle?news=278 Wed, 30 Nov 2011 00:00:00 GMT Bank of England staff raise £36,645.11 for Action Duchenne Bank of England staff raise £36,645.11 for Action Duchenne http://www.actionduchenne.org/viewarticle?news=277 Fri, 25 Nov 2011 00:00:00 GMT GSK announces new US clinical trial Study DMD114876: A Clinical Study to Assess Two Doses of GSK2402986 in Subjects With Duchenne Muscular Dystrophy (DMD) http://www.actionduchenne.org/viewarticle?news=273 Tue, 22 Nov 2011 00:00:00 GMT Thousands of £££s roll in as people around the country raise money for Action Duchenne Bumper ideas spark off charity events in the lead up to Bonfire Night http://www.actionduchenne.org/viewarticle?news=272 Wed, 16 Nov 2011 00:00:00 GMT Highland dancer’s Long Hair raises money for Action Duchenne Chloe McClean stages sponsored hair cut that brings in £1,200 for charity http://www.actionduchenne.org/viewarticle?news=270 Tue, 15 Nov 2011 00:00:00 GMT Irish run raises money for Action Duchenne Father raises over £3,000 from Dublin Marathon to help boys with Duchenne http://www.actionduchenne.org/viewarticle?news=271 Tue, 15 Nov 2011 00:00:00 GMT Include Duchenne’s Decipha literacy programme aimed at boys living with Duchenne Muscular Dystrophy wins The National Lottery Award for best education project Mother wins National Lottery Award for ground breaking project to help her son and many others like him to learn to read http://www.actionduchenne.org/viewarticle?news=269 Wed, 9 Nov 2011 00:00:00 GMT Include Duchenne interviewed for The Mirror More coverage for Include Duchenne for National Lottery Award Win http://www.actionduchenne.org/viewarticle?news=267 Tue, 8 Nov 2011 00:00:00 GMT Action Duchenne wins national lottery award live on BBC1 Include Duchenne project wins best Education Project at The National Lottery Awards 2011 http://www.actionduchenne.org/viewarticle?news=266 Sun, 6 Nov 2011 00:00:00 GMT Duchenne Newborn Screening in Wales Withdrawn Announced by the Welsh Government today http://www.actionduchenne.org/viewarticle?news=263 Thu, 3 Nov 2011 00:00:00 GMT Joint statement from Action Duchenne and Muscular Dystrophy Campaign Families devastated as life-changing test for babies is withdrawn http://www.actionduchenne.org/viewarticle?news=264 Thu, 3 Nov 2011 00:00:00 GMT DMD Heart Protection Trial is now recruting at five centres Action Duchenne supports long term heart medication trial funded by the British Heart Foundation http://www.actionduchenne.org/viewarticle?news=265 Thu, 3 Nov 2011 00:00:00 GMT Duchenne inspired photographic exhibition gets coverage on BBC Tyran Hawthorn’s exhibition opening a great success http://www.actionduchenne.org/viewarticle?news=261 Tue, 1 Nov 2011 00:00:00 GMT International Duchenne Conference 2011 Webinar Register today to take part online http://www.actionduchenne.org/viewarticle?news=262 Tue, 1 Nov 2011 00:00:00 GMT Boris challenged on welfare cuts by disabled campaigners at Olympic event Mayor heckled on the coalition's cuts to public services, and ongoing welfare reforms http://www.actionduchenne.org/viewarticle?news=260 Fri, 21 Oct 2011 00:00:00 BST Listen now as Action Duchenne Trustee joins the debate on Radio 5 Live Your Call Mark Silverman gives views on care for Duchenne on ‘Are GPs too Powerful’ phone in debate http://www.actionduchenne.org/viewarticle?news=258 Thu, 20 Oct 2011 00:00:00 BST UK National Institute for Health and Clinical Excellence officially endorses standards of care for Duchenne Muscular Dystrophy Accreditation is key to broadening the reach of critical services as they become available on the NHS http://www.actionduchenne.org/viewarticle?news=259 Thu, 20 Oct 2011 00:00:00 BST Young artist living with Duchenne shows first exhibition at University of Portsmouth in support of Action Duchenne Talented artist and photographer chooses his life limiting condition as theme for first collection http://www.actionduchenne.org/viewarticle?news=256 Wed, 19 Oct 2011 00:00:00 BST International Duchenne Research Conference Updates to Agenda and we now have FAQ's from our Researchers speaking at the Event http://www.actionduchenne.org/viewarticle?news=257 Wed, 19 Oct 2011 00:00:00 BST National newspaper asks why exon skipping trials were not continued The Telegraph reports on trials for a cure for Duchenne Muscular Dystrophy http://www.actionduchenne.org/viewarticle?news=255 Mon, 17 Oct 2011 00:00:00 BST Clinical Development Programme Update from GSK John Kraus and Padraig Wright, GlaxoSmithKline http://www.actionduchenne.org/viewarticle?news=254 Fri, 14 Oct 2011 00:00:00 BST International Conference Agenda Upated Comedienne Francesca Martinez will perform at Gala Dinner http://www.actionduchenne.org/viewarticle?news=253 Thu, 13 Oct 2011 00:00:00 BST What next for the NHS? Health and Social Care Bill passes the Lords http://www.actionduchenne.org/viewarticle?news=252 Wed, 12 Oct 2011 00:00:00 BST Take Action Today to Protect the NHS Today members of the House of Lords are debating the future of the NHS http://www.actionduchenne.org/viewarticle?news=251 Tue, 11 Oct 2011 00:00:00 BST Duchenne petition Sign e-petition for Duchenne research http://www.actionduchenne.org/viewarticle?news=250 Mon, 10 Oct 2011 00:00:00 BST Only Watch raises over 4m Euros for Duchenne Research Luc and Monique Pettavino hold watch sale in Monaco http://www.actionduchenne.org/viewarticle?news=249 Fri, 30 Sep 2011 00:00:00 BST Action Duchenne features on BBC national lottery show Action Duchenne's Decipha programme highlighted during preview of lottery award finalists http://www.actionduchenne.org/viewarticle?news=248 Mon, 26 Sep 2011 00:00:00 BST Channel swimmer raises £10k Lisa Auchinvole has to cut short channel swim but reaches goal to raise funds for Action Duchenne http://www.actionduchenne.org/viewarticle?news=246 Wed, 14 Sep 2011 00:00:00 BST Manchester City Supporters Club choose Action Duchenne for charity of the year Supporters of iconic football team select Duchenne charity http://www.actionduchenne.org/viewarticle?news=247 Wed, 14 Sep 2011 00:00:00 BST Chris Spowart completes Wales Ironman despite bad weather First ever Wales Ironman completed during last throes of Hurricane Katia http://www.actionduchenne.org/viewarticle?news=242 Tue, 13 Sep 2011 00:00:00 BST Prosensa Advances Three Exon Skipping Candidates for Duchenne Muscular Dystrophy into the Next Development Stage Prosensa to receive up to £27M in development and milestone payments from GSK http://www.actionduchenne.org/viewarticle?news=243 Tue, 13 Sep 2011 00:00:00 BST Northern Ireland families run highly successful Collect4Duchenne campaign Collect4Duchenne Day nets nearly £1000 http://www.actionduchenne.org/viewarticle?news=244 Tue, 13 Sep 2011 00:00:00 BST £3300 raised at Karioke night in Strabane Local family raises the roof for Action Duchenne http://www.actionduchenne.org/viewarticle?news=245 Tue, 13 Sep 2011 00:00:00 BST Update on Ataluren Statement from PTC http://www.actionduchenne.org/viewarticle?news=240 Fri, 9 Sep 2011 00:00:00 BST Action Duchenne International Conference Agenda Download the Conference Agenda http://www.actionduchenne.org/viewarticle?news=241 Fri, 9 Sep 2011 00:00:00 BST Action Duchenne calls for second round votes for National Lottery Awards Finals Charity’s ‘Include Duchenne’ nominated for ‘Best Education project’ http://www.actionduchenne.org/viewarticle?news=239 Thu, 8 Sep 2011 00:00:00 BST Kilimanjaro climb peaks fundraising success Climb of a lifetime is pinnacle of fantastic fundraising efforts for two Lancashire ladies http://www.actionduchenne.org/viewarticle?news=237 Mon, 5 Sep 2011 00:00:00 BST Genzyme ataluren in nmDBMD Programme Update September 2011 Genzyme has developed this Programme Update as a way to communicate about ataluren and as part of their ongoing commitment in keeping the DBMD community informed. http://www.actionduchenne.org/viewarticle?news=238 Mon, 5 Sep 2011 00:00:00 BST Vote now for Include Duchenne in the National Lottery Awards Second and final round of voting to decide the winner in the National Lottery Awards starts now http://www.actionduchenne.org/viewarticle?news=236 Fri, 2 Sep 2011 00:00:00 BST Scottish Highland Dancing community raise £4000 for Action Duchenne from ‘Assemble and Leap’ concert Concert held by Scottish Official Board of Highland Dancing donates proceeds to Action Duchenne and MS Scotland http://www.actionduchenne.org/viewarticle?news=235 Thu, 1 Sep 2011 00:00:00 BST Success for National Collect4Duchenne day in the North East Grandparent Joy Maxwell and friends raise over £300 in Tynemouth and Morrisons in Alnwick in just three hours http://www.actionduchenne.org/viewarticle?news=233 Wed, 31 Aug 2011 00:00:00 BST Gym club owner to swim channel for childhood friend’s son Lisa Auchinvole, 40, aims to raise £10,000 to support Action Duchenne charity for muscle wasting disease after friend’s son diagnosed http://www.actionduchenne.org/viewarticle?news=232 Tue, 30 Aug 2011 00:00:00 BST Race night at Greenock Morton FC Supporters Club raises over £1,000 The family who inspired sponsored bag-packs around Scotland continues pledge to support Action Duchenne http://www.actionduchenne.org/viewarticle?news=231 Tue, 23 Aug 2011 00:00:00 BST Association of Credit Professionals supports National Dress Down 4 Duchenne Day on 23 September Action Duchenne signs up corporate sponsor for National campaign http://www.actionduchenne.org/viewarticle?news=230 Mon, 22 Aug 2011 00:00:00 BST Allstate Northern Ireland raises £300 for Action Duchenne Book Sale hits the mark! http://www.actionduchenne.org/viewarticle?news=228 Mon, 15 Aug 2011 00:00:00 BST Virgin Media auctions football memorabilia to support Action Duchenne Media giants Virgin Media continue to help http://www.actionduchenne.org/viewarticle?news=229 Mon, 15 Aug 2011 00:00:00 BST Fife man to do sky dive for Action Duchenne Cancelled sky dive due to take place this Sunday, please pledge support http://www.actionduchenne.org/viewarticle?news=227 Thu, 11 Aug 2011 00:00:00 BST Action Duchenne pays tribute to brave Stuart Wickison aged 23 Stuart Wickison lived with Duchenne muscular dystrophy and sadly took his own life on Tuesday 2nd August . http://www.actionduchenne.org/viewarticle?news=226 Wed, 10 Aug 2011 00:00:00 BST Action Duchenne launches new Muscle Centre Monitoring Project New website will bring treatment information closer to home for families and young people living with Duchenne Muscular Dystrophy http://www.actionduchenne.org/viewarticle?news=225 Tue, 9 Aug 2011 00:00:00 BST Duchball Rally 2011 Family & Friends burn rubber in aid of Duchenne Muscular Dystrophy http://www.actionduchenne.org/viewarticle?news=222 Mon, 8 Aug 2011 00:00:00 BST Newport - Fire Brigade Car Wash & Donations Family & Friends team up with the Fire Brigade in aid of Action Duchenne http://www.actionduchenne.org/viewarticle?news=223 Mon, 8 Aug 2011 00:00:00 BST Ilfracombe sees mass Lantern Release to raise awareness and funds for Duchenne Muscular Dystrophy Over 700 Chinese Lanterns release in aid of Action Duchenne http://www.actionduchenne.org/viewarticle?news=224 Mon, 1 Aug 2011 00:00:00 BST North East company nominates Action Duchenne as charity of the month! Local supporters group calls for new members http://www.actionduchenne.org/viewarticle?news=221 Fri, 29 Jul 2011 00:00:00 BST News coverage highlights research progress Action Duchenne families and Chair speak out about the need for further work to build on success. http://www.actionduchenne.org/viewarticle?news=220 Tue, 26 Jul 2011 00:00:00 BST Promising results published today in the Lancet on Exon Skipping to treat Duchenne Muscular Dystrophy tinged with disappointment as extension study is not undertaken Delays to development of breakthrough treatments brings bitter disappointment to Duchenne families http://www.actionduchenne.org/viewarticle?news=218 Mon, 25 Jul 2011 00:00:00 BST Big Lottery Fund awards Action Duchenne £500,000 for new community programme Charity’s pioneering ‘Takin’ Charge’ project helps young men with rare genetic disease prepare for adulthood http://www.actionduchenne.org/viewarticle?news=216 Tue, 19 Jul 2011 00:00:00 BST Local family enlists the help of friends to raise over £20,000 for Duchenne Muscular Dystrophy Charities Golf day with a difference http://www.actionduchenne.org/viewarticle?news=217 Tue, 19 Jul 2011 00:00:00 BST Acrewood Nursery in Stirling holds BBQ and raises over £450 Stirling efforts of nursery raise more money for Action Duchenne after successful Seeds of Hope campaign http://www.actionduchenne.org/viewarticle?news=214 Fri, 15 Jul 2011 00:00:00 BST Parent Project MD Conference 2011 Duchenne Charity PPMD holds international conference in Baltimore US http://www.actionduchenne.org/viewarticle?news=215 Fri, 15 Jul 2011 00:00:00 BST Edinburgh Fringe Comedy shows preview in London for Action Duchenne Get tickets now for two hilarious comedy shows before they hit the Edinburgh fringe and support Action Duchenne - 14 July http://www.actionduchenne.org/viewarticle?news=212 Tue, 12 Jul 2011 00:00:00 BST Home of premier league football hosts charity ball for Action Duchenne Fundraising duo have raised over £11k already this year! http://www.actionduchenne.org/viewarticle?news=213 Tue, 12 Jul 2011 00:00:00 BST Morning Star highlights plight of those living with Duchenne National paper runs two page spread about living with Duchenne http://www.actionduchenne.org/viewarticle?news=211 Thu, 7 Jul 2011 00:00:00 BST 9th International Duchenne Conference Sign up today http://www.actionduchenne.org/viewarticle?news=210 Tue, 5 Jul 2011 00:00:00 BST NAC Responds to SEN Green Paper SEN and Disability Green Paper http://www.actionduchenne.org/viewarticle?news=209 Thu, 30 Jun 2011 00:00:00 BST Paul Chandler Completes London to Paris Bike ride Congratulations Paul! http://www.actionduchenne.org/viewarticle?news=207 Wed, 29 Jun 2011 00:00:00 BST Holyrood lobby highlights standards of care Action Duchenne at the Scottish Parliament http://www.actionduchenne.org/viewarticle?news=208 Wed, 29 Jun 2011 00:00:00 BST Action Duchenne stages annual lobby to Scottish Parliament to demand decent standards of care for Duchenne patients and end to the postcode lottery Families and supporters unite in their call for further funding to provide best practice standards of care and research to find a cure http://www.actionduchenne.org/viewarticle?news=205 Tue, 28 Jun 2011 00:00:00 BST Our most successful ever Bag Pack! A whopping £1100 raised at Morrisons in Byker in the North East. http://www.actionduchenne.org/viewarticle?news=204 Mon, 27 Jun 2011 00:00:00 BST Include Duchenne scooped most votes in Best Education Project in National Lottery Awards But we still need your support again in September - watch this space for details http://www.actionduchenne.org/viewarticle?news=203 Thu, 23 Jun 2011 00:00:00 BST TV cameras out as Action Duchenne lobbies the Welsh Assembly A positive day with many families meeting their newly appointed AMS for the first time http://www.actionduchenne.org/viewarticle?news=200 Wed, 22 Jun 2011 00:00:00 BST Association of Credit Professionals spread the word for Action Duchenne Professional body promotes Action Duchenne to its membership to raise awareness http://www.actionduchenne.org/viewarticle?news=201 Wed, 22 Jun 2011 00:00:00 BST Your chance to tell us what you think about Medical Research for Duchenne How do you decide to take part – a new study at Newcastle University http://www.actionduchenne.org/viewarticle?news=202 Wed, 22 Jun 2011 00:00:00 BST Action Duchenne stages annual lobby at Welsh Assembly to demand decent standards of care for Duchenne patients and end to the postcode lottery Families and supporters unite in their call for further funding to provide best practice standards of care and research to find a cure http://www.actionduchenne.org/viewarticle?news=199 Tue, 21 Jun 2011 00:00:00 BST Nancy Drew and the Mystery of the Whole Genome Gene Sequencing http://www.actionduchenne.org/viewarticle?news=198 Fri, 17 Jun 2011 00:00:00 BST AVI clinical trial update AVI BioPharma Provides Update on Initiation of Eteplirsen Phase 2 Clinical Trial http://www.actionduchenne.org/viewarticle?news=196 Thu, 16 Jun 2011 00:00:00 BST Action Duchenne Westminster Lobby goes from strength to strength Over 20 boys & young men living with Duchenne match on Downing Street http://www.actionduchenne.org/viewarticle?news=197 Thu, 16 Jun 2011 00:00:00 BST Families will be travelling to Stormont to join the Action Duchenne lobby to the Northern Ireland Assembly for better Standards of Care for Duchenne patients Families and supporters unite in their call for further funding to provide best practice standards of care and research to find a cure http://www.actionduchenne.org/viewarticle?news=194 Mon, 6 Jun 2011 00:00:00 BST Runners converge at Edinburgh Marathon Festival to support Action Duchenne! One of the world’s top 10 city marathon venues becomes hot magnet for fund-raising activities http://www.actionduchenne.org/viewarticle?news=192 Sat, 4 Jun 2011 00:00:00 BST Family raises over £2,000 for Action Duchenne Determination to succeed makes National headlines http://www.actionduchenne.org/viewarticle?news=193 Sat, 4 Jun 2011 00:00:00 BST Father joins celebs in London to Paris cycle race to raise funds for a cure Paul Chandler achieves perfect physical fitness to fight for a cure http://www.actionduchenne.org/viewarticle?news=191 Thu, 2 Jun 2011 00:00:00 BST ‘Include Duchenne’ project Decipha gets to finals of the National Lottery Awards 2011 Vote now to ensure Decipha wins and appears on National TV http://www.actionduchenne.org/viewarticle?news=190 Tue, 31 May 2011 00:00:00 BST Action Duchenne supports the 38 Degrees campaign to Save the NHS Members and supporters of the charity urged to join more than 400,000 people who have already signed the high profile petition http://www.actionduchenne.org/viewarticle?news=189 Mon, 30 May 2011 00:00:00 BST Latest update from Prosensa Prosensa’s Clinical Development Plan Update – May 2011 http://www.actionduchenne.org/viewarticle?news=187 Tue, 24 May 2011 00:00:00 BST Clinical Trials update from GSK - some trials are still recruiting GSK’s Clinical Development Plan for DMD – May 2011 http://www.actionduchenne.org/viewarticle?news=188 Tue, 24 May 2011 00:00:00 BST NHS reforms - listening exercise Families have until 31 May to make their views known http://www.actionduchenne.org/viewarticle?news=186 Mon, 23 May 2011 00:00:00 BST Pedal power holds the key to fundraising success Stuart Giles is recruiting for this year's Pedal for Scotland http://www.actionduchenne.org/viewarticle?news=181 Tue, 17 May 2011 00:00:00 BST Banana raises awareness for Action Duchenne in the Great Manchester Run James Stockton gets his photo in the Daily Mirror http://www.actionduchenne.org/viewarticle?news=182 Tue, 17 May 2011 00:00:00 BST Thousands March on parliament in the Hardest Hit protest UK DPC organises day of protest http://www.actionduchenne.org/viewarticle?news=180 Wed, 11 May 2011 00:00:00 BST Upton Junior School rallies together to support Action Duchenne Kent school children raise £3325 with sponsored events http://www.actionduchenne.org/viewarticle?news=179 Tue, 10 May 2011 00:00:00 BST Action family starts running to stop wasting Children join the Great North Run for Action Duchenne http://www.actionduchenne.org/viewarticle?news=178 Mon, 9 May 2011 00:00:00 BST Update on the Therapeutic approaches to muscular dystrophy This is a summary of the article written by Aurelie Goyenvalle, Jane T Seto, Kay E Davies and Jeffrey Chamberlain, which was published by Oxford University Press on 5 April 2011 http://www.actionduchenne.org/viewarticle?news=177 Fri, 6 May 2011 00:00:00 BST Daily treatment with SMT C1100 dramatically reduces muscular dystrophy symptoms in mdx mouse Utrophin upregulator could be another step closer to providing a viable treatment for Duchenne patients says Action Duchenne http://www.actionduchenne.org/viewarticle?news=176 Thu, 5 May 2011 00:00:00 BST Ataluren update from Genzyme Follow-on open label clinical study announced for previous trial participants http://www.actionduchenne.org/viewarticle?news=175 Mon, 2 May 2011 00:00:00 BST ACE-031 statement from Acceleron and Shire Clinical trial suspended; intention is to start a new study after discussions with regulatory agencies http://www.actionduchenne.org/viewarticle?news=174 Mon, 25 Apr 2011 00:00:00 BST Local primary school clubs together for little Travis and raises £250 for Action Duchenne! Action Duchenne is now £250 better off thanks to the ingenuity of Chapel Road Primary School. http://www.actionduchenne.org/viewarticle?news=172 Thu, 21 Apr 2011 00:00:00 BST Brownie points go to cub scouts for supporting Action Duchenne 5th Darlington Cub Scout Group took part in a collective marathon to raise awareness and funds for Action Duchenne http://www.actionduchenne.org/viewarticle?news=173 Thu, 21 Apr 2011 00:00:00 BST GSK2402968 Clinical Development Programme Update Forty-Eight Week Follow-Up Data from a Phase I/IIa Extension Study of PRO051/GSK2402968 in Subjects with Duchenne Muscular Dystrophy http://www.actionduchenne.org/viewarticle?news=171 Fri, 15 Apr 2011 00:00:00 BST AVI BioPharma Receives Approval of Nonproprietary Name Eteplirsen for Lead Duchenne Muscular Dystrophy Therapeutic Candidate, AVI-4658 AVI announce Phase 2 trial in June http://www.actionduchenne.org/viewarticle?news=169 Tue, 12 Apr 2011 00:00:00 BST AVI BioPharma to Present Data for RNA-Based Duchenne Muscular Dystrophy Drug Candidate at the 63rd Annual Meeting of the American Academy of Neurology AVI presents data at Conference in the US http://www.actionduchenne.org/viewarticle?news=170 Tue, 12 Apr 2011 00:00:00 BST Action Duchenne supports UK Disabled People’s Council Day of Protest on 11th May ahead of Action Duchenne lobby on 15 June Register now to be part of the Hardest Hit March, Protest Rally and Lobby to Parliament to protest against the impact of spending cuts on disabled people http://www.actionduchenne.org/viewarticle?news=168 Mon, 11 Apr 2011 00:00:00 BST £2.5m research grant for Duchenne Muscular Dystrophy awarded to Oxford researchers Funding for pioneering research into gene therapy by Action Duchenne has led to further funds for research into this life limiting disease http://www.actionduchenne.org/viewarticle?news=167 Fri, 8 Apr 2011 00:00:00 BST Action Duchenne welcomes backtrack on NHS plans Charity states that government plans that threaten the most vulnerable must now be re-examined, young men to lobby parliament for access to treatment http://www.actionduchenne.org/viewarticle?news=166 Wed, 6 Apr 2011 00:00:00 BST Phrixus Pharmaceuticals, Inc. announces $890,000 in NIH funding for its programs in Duchenne Muscular Dystrophy and heart failure Awards to fund respiratory studies for Carmeseal™ in Duchenne muscular dystrophy and mechanism of action studies in heart failure http://www.actionduchenne.org/viewarticle?news=165 Tue, 5 Apr 2011 00:00:00 BST Spring is here! Join in the Easter fun at the ‘Miles for Muscles’ charity event The Killowen Fundraising Group is holding the second annual ‘Miles for Muscles’ Race and Family Walk this Easter to raise £2,000 for Action Duchenne. http://www.actionduchenne.org/viewarticle?news=164 Thu, 31 Mar 2011 00:00:00 BST Genzyme Atalauren update Genzyme Ataluren Programme March 2011 update issued http://www.actionduchenne.org/viewarticle?news=163 Wed, 30 Mar 2011 00:00:00 BST Schools and their teachers make great strides in supporting Duchenne boys Gavin Richardson raises over £300 in the Alloa half marathon http://www.actionduchenne.org/viewarticle?news=162 Tue, 29 Mar 2011 00:00:00 BST Local family bags £623 for Action Duchenne by offering sponsored packing service at Morrisons! http://www.actionduchenne.org/viewarticle?news=161 Mon, 28 Mar 2011 00:00:00 BST Personalised Medicine Conference – Wellcome Collection Conference Centre, London Karl Bettelheim, Trustee of Action Duchenne together with Nick Catlin, CEO, attended the recent joint BIA/MHRA conference ‘Personalised medicine – the evolving regulatory landscape’, held at the Wellcome Collection Conference Centre, London earlier this month. Here is Karl’s report from the event http://www.actionduchenne.org/viewarticle?news=160 Tue, 22 Mar 2011 00:00:00 GMT Action Duchenne appoints new Campaign and Advocacy Manager Charity increases pressure on UK government to support treatment research and care for those living with Duchenne Muscular Dystrophy http://www.actionduchenne.org/viewarticle?news=159 Mon, 21 Mar 2011 00:00:00 GMT Action Duchenne lobbies Welsh Assembly for Rare Disease Day Great support for Rare Disease UK http://www.actionduchenne.org/viewarticle?news=158 Thu, 17 Mar 2011 00:00:00 GMT Young GB Athlete Richard Goodman is Ambassador for Action Duchenne Olympic hopeful raises awareness of charity work by championing cause http://www.actionduchenne.org/viewarticle?news=157 Wed, 16 Mar 2011 00:00:00 GMT Charity night – live music and disco at the Delacroix pub (Derry) Come and boogie on down for a great cause! http://www.actionduchenne.org/viewarticle?news=156 Mon, 14 Mar 2011 00:00:00 GMT Action Duchenne supports Rare Disease UK national strategy for lobbying Government for cohesive treatment for those with rare diseases National consortium of charities call for step changes in commissioning and planning processes for rare diseases to ensure equitable access to health services and treatments regardless of a patient’s location http://www.actionduchenne.org/viewarticle?news=154 Thu, 3 Mar 2011 00:00:00 GMT Southend United chooses Leon Thorn as mascot for match Local fan living with Duchenne gets the chance to support his team http://www.actionduchenne.org/viewarticle?news=155 Thu, 3 Mar 2011 00:00:00 GMT CARE-NMD launches new project website - visit now Online resources made available to patients, families and clinicians across Europe on standards of care for DMD http://www.actionduchenne.org/viewarticle?news=152 Tue, 1 Mar 2011 00:00:00 GMT Funds for Action Duchenne as Xbox fans blast aliens with new game Developer dad donates proceeds of sales from new Xbox 360 game to charity http://www.actionduchenne.org/viewarticle?news=153 Tue, 1 Mar 2011 00:00:00 GMT Northolt Methodist Church raises over £1000 for Action Duchenne Churchgoers’ successful fundraising activities benefit chosen charity of the year http://www.actionduchenne.org/viewarticle?news=151 Mon, 28 Feb 2011 00:00:00 GMT Love Runs raise over £40k to help find a cure! Action Duchenne Love Runs a big hit with runners http://www.actionduchenne.org/viewarticle?news=150 Fri, 25 Feb 2011 00:00:00 GMT Quality of Standards of Care Join the focus group to give your opinions on Quality of Care http://www.actionduchenne.org/viewarticle?news=149 Mon, 21 Feb 2011 00:00:00 GMT Rising UK athletics star becomes an Ambassador for Action Duchenne Richard Goodman, a top 3 ranked 3,000m and 5,000m runner in his age group, becomes an ambassador for Action Duchenne http://www.actionduchenne.org/viewarticle?news=148 Sat, 19 Feb 2011 00:00:00 GMT Disability Living Allowance Reform Act Now! Deadline extended to 18th February! http://www.actionduchenne.org/viewarticle?news=144 Wed, 16 Feb 2011 00:00:00 GMT Dr Karl Bettelheim Reviews Duchenne Research Action Duchenne Trustee Dr Karl Bettelheim updates on the very latest Duchenne Research http://www.actionduchenne.org/viewarticle?news=142 Tue, 15 Feb 2011 00:00:00 GMT Action Duchenne’s “Life Thru a Lens” photographic exhibition and ground-breaking film to be on show in two places in one week Whickham Villa Tues 15 Feb and Newcastle Thurs 17 Feb http://www.actionduchenne.org/viewarticle?news=143 Tue, 15 Feb 2011 00:00:00 GMT Take part in the 2011 South Coast Duchball rally and raise funds for Action Duchenne July car rally sets fundraising target of £6000 http://www.actionduchenne.org/viewarticle?news=141 Fri, 11 Feb 2011 00:00:00 GMT Action Duchenne appalled that MP Paul Maynard was mocked for his disability during parliamentary debate Equalities chief Trevor Phillips told the BBC that Speaker John Bercow should look into the matter http://www.actionduchenne.org/viewarticle?news=139 Thu, 10 Feb 2011 00:00:00 GMT Action Duchenne supports Rare Disease Day 2011 Join the National Lobbies - download our lealfet http://www.actionduchenne.org/viewarticle?news=140 Thu, 10 Feb 2011 00:00:00 GMT Action Duchenne Love Runs – there’s still time to register and be officially timed And some last minute hints and tips for performing at your best on the big day http://www.actionduchenne.org/viewarticle?news=138 Tue, 8 Feb 2011 00:00:00 GMT Read about Genius Film project in Arts Professional magazine Sophie Medd writes about Duchenne – The Forgotten Generation for professional trade magazine http://www.actionduchenne.org/viewarticle?news=135 Fri, 4 Feb 2011 00:00:00 GMT Stop Press - Pilot Trials Now IGF-1 trial starts Pilot Trials Now, part of CharleysFund forges ahead with ground breaking trial http://www.actionduchenne.org/viewarticle?news=136 Fri, 4 Feb 2011 00:00:00 GMT Hartlepool primary school fundraising success Pupils and staff at primary school raise over £1000 with Christmas CD, wishing well and Boxing Day sea plunge http://www.actionduchenne.org/viewarticle?news=137 Fri, 4 Feb 2011 00:00:00 GMT Call to Action – Action Duchenne supports Rare Disease Day 2011 28 February is Rare Disease Day – support required for Lobby Days http://www.actionduchenne.org/viewarticle?news=134 Thu, 3 Feb 2011 00:00:00 GMT Come and enjoy a drinks reception at Whickham Villa Health Club featuring Action Duchenne’s “Life Thru a Lens” photographic exhibition and ground-breaking film Newcastle venue first to screen Duchenne – The Forgotten Generation in 201 http://www.actionduchenne.org/viewarticle?news=133 Wed, 2 Feb 2011 00:00:00 GMT 'About a boy' - U Magazine tackles Duchenne Muscular Dystrophy Oxfordshire family highlight concerns over government funding cuts http://www.actionduchenne.org/viewarticle?news=131 Sat, 29 Jan 2011 00:00:00 GMT Action Duchenne is recruiting a Campaign and Advocacy Manager Act now if you would like to join a dynamic team and really make a difference http://www.actionduchenne.org/viewarticle?news=129 Thu, 27 Jan 2011 00:00:00 GMT Action Duchenne Love Runs - Time to step up the training But its not too late to join in the fun and raise money for a great cause http://www.actionduchenne.org/viewarticle?news=128 Tue, 25 Jan 2011 00:00:00 GMT Sales of Caledonian Cookbooks soar in Virgin Media fundraising efforts Scottish couple raise awareness and much needed funds thanks to Virgin Media staff http://www.actionduchenne.org/viewarticle?news=127 Wed, 19 Jan 2011 00:00:00 GMT Current postcode lottery of care will worsen under new NHS reforms, says Action Duchenne Services for our children are already poor, the fast rate of change proposed will leave the vulnerable even further behind http://www.actionduchenne.org/viewarticle?news=126 Tue, 18 Jan 2011 00:00:00 GMT ‘Action’ Tilson goes from strength to strength as he is named finalist for yet another award Carl Tilson is a National Finalist for THE SHOUT AWARD from vinspired. http://www.actionduchenne.org/viewarticle?news=125 Thu, 13 Jan 2011 00:00:00 GMT Disability Living Allowance reform – You need to act now – Time is of the Essence! Residential Education Transport cuts will hit those living with Duchenne http://www.actionduchenne.org/viewarticle?news=124 Tue, 11 Jan 2011 00:00:00 GMT The Caledonian Kitchen scoops award in the Gourmand World Cookbook Awards 2010 Beautifully written and produced charity recipe book flies flag for Scotland and Action Duchenne http://www.actionduchenne.org/viewarticle?news=123 Fri, 24 Dec 2010 00:00:00 GMT Genzyme Ataluren Programme Update Genzyme issues Programme Update to DBMD community http://www.actionduchenne.org/viewarticle?news=122 Thu, 23 Dec 2010 00:00:00 GMT Heartwarming 10K ‘Action Duchenne Love Run’ limbers up for ninth successful year Action Duchenne charity runs are held around the country to raise money for research into life limiting children’s disease http://www.actionduchenne.org/viewarticle?news=121 Tue, 21 Dec 2010 00:00:00 GMT The Action Duchenne Annual Raffle Draw The Action Duchenne Annual Raffle Draw http://www.actionduchenne.org/viewarticle?news=120 Mon, 20 Dec 2010 00:00:00 GMT A new initiative to promote high-quality care for Duchenne Update from CARE-NMD http://www.actionduchenne.org/viewarticle?news=118 Fri, 17 Dec 2010 00:00:00 GMT Sir David Jason film starring Edward Ackroyd wins clean sweep at Awards Duchenne boy stars in film which takes top honours at Monaco Film Festival http://www.actionduchenne.org/viewarticle?news=119 Fri, 17 Dec 2010 00:00:00 GMT Dr. Karl A Bettelheim reviews recent research relating to Duchenne Muscular Dystrophy in his blog Retired microbiologist/biochemist with a grandson with Duchenne explains research in easy to understand language http://www.actionduchenne.org/viewarticle?news=117 Wed, 15 Dec 2010 00:00:00 GMT Action Duchenne joins MDC in condemnation of Disability Living Allowance reform Residential Education Transport cuts could hit those living with Duchenne http://www.actionduchenne.org/viewarticle?news=116 Tue, 14 Dec 2010 00:00:00 GMT Prizes drawn for Action Duchenne's Annual Raffle this Friday Check your numbers on Friday http://www.actionduchenne.org/viewarticle?news=115 Mon, 13 Dec 2010 00:00:00 GMT Update from the MDEX Consortium MDEX consortium extends membership to include experts from other countries http://www.actionduchenne.org/viewarticle?news=112 Fri, 10 Dec 2010 00:00:00 GMT New trial for skipping exon 51 announced by GSK First wave sites in France, Germany and Republic of Korea http://www.actionduchenne.org/viewarticle?news=113 Fri, 10 Dec 2010 00:00:00 GMT Illminster school appoints Action Duchenne its charity of the year Swanmeade Community which has three pupils living with Duchenne aims high http://www.actionduchenne.org/viewarticle?news=114 Fri, 10 Dec 2010 00:00:00 GMT Karaoke King’s charity night success marks start of fundraising campaign on behalf of Action Duchenne Charity fundraiser night at Blyth pub raises £200 http://www.actionduchenne.org/viewarticle?news=110 Thu, 9 Dec 2010 00:00:00 GMT Risca firms bare (almost) all for charity calendar Charity calendar raises over £2,000 so far for Action Duchenne http://www.actionduchenne.org/viewarticle?news=111 Thu, 9 Dec 2010 00:00:00 GMT ACTION DUCHENNE APOLOGISES FOR CANCELLATION OF CONFERENCE CALL WITH GENZYME CONFERENCE CALL FOR TUESDAY 7TH DECEMBER IS CANCELLED http://www.actionduchenne.org/viewarticle?news=107 Tue, 7 Dec 2010 00:00:00 GMT The Action Duchenne Love Run 2011 In London, Cardiff & Manchester http://www.actionduchenne.org/viewarticle?news=108 Tue, 7 Dec 2010 00:00:00 GMT Rare Disease UK report highlights plight of patients Action Duchenne campaigner Carl Tilson features as a case study http://www.actionduchenne.org/viewarticle?news=106 Mon, 6 Dec 2010 00:00:00 GMT Observational Data from One-Year Follow-up Study Validate Six-Minute Walk Distance as an Outcome Measure in Duchenne and Becker Muscular Dystrophy PTC Therapuetics confirm the utility fo the 6 minute walk test in Ataluren Trial http://www.actionduchenne.org/viewarticle?news=103 Wed, 1 Dec 2010 00:00:00 GMT Volunteer for Action Duchenne is regional winner of National volunteering award Local hero and tireless campaigner Carl ‘Action’ Tilson recognised for extraordinary volunteering efforts in the vinspired National Awards http://www.actionduchenne.org/viewarticle?news=104 Wed, 1 Dec 2010 00:00:00 GMT Rotary Club's Support Action Duchenne Rotary Club's give kind donations to help make a difference. http://www.actionduchenne.org/viewarticle?news=102 Thu, 25 Nov 2010 00:00:00 GMT Stand up Comic Francesca Martinez hosts Action Duchenne Oscars Charity Rolls out the Red Carpet for film premier by disadvantaged young filmmakers http://www.actionduchenne.org/viewarticle?news=101 Thu, 11 Nov 2010 00:00:00 GMT Action Duchenne 8th International Conference webinars You can view meetings online and send us questions and comments http://www.actionduchenne.org/viewarticle?news=100 Wed, 10 Nov 2010 00:00:00 GMT Thamesmead mother is joined by MP in fight for son’s services Action Duchenne Lobby results in improvement in services for Adam aged 7, thanks to intervention of local MP Teresa Pearce http://www.actionduchenne.org/viewarticle?news=99 Tue, 19 Oct 2010 00:00:00 BST AVI BioPharma’s Investigational Drug Candidate AVI-4658 Demonstrates Broadly Favorable Profile of Safety and Tolerability, New Dystrophin Expression, Stable Clinical Performance and Inflammatory Modulation in the Treatment of Duchenne Muscular Dystrophy -- AVI-4658 Data from Phase 1b/2 Study Presented at 15th International Congress of the World Muscle Society Supports Potential as Disease Modifying Therapy – http://www.actionduchenne.org/viewarticle?news=98 Fri, 15 Oct 2010 00:00:00 BST Action Duchenne National Advocacy Council responds to DOH White Papers Liberating the NHS: Commissioning For Patients and Achieving Equity and Excellence for Children http://www.actionduchenne.org/viewarticle?news=96 Thu, 7 Oct 2010 00:00:00 BST Action Duchenne National Advocacy Council submission to Commons Select Committee Inquiry into Commissioning http://www.actionduchenne.org/viewarticle?news=97 Thu, 7 Oct 2010 00:00:00 BST Interest in charity Cook Book “Looks Good, Tastes Great – Jewish Culinary Favourites” booms due to Ed Miliband fever Duchenne Muscular Dystrophy charity celebrity recipe book boosted by Labour Party Leader support with all proceeds to support research http://www.actionduchenne.org/viewarticle?news=95 Tue, 5 Oct 2010 00:00:00 BST 15 year old Duchenne boy gets first new artificial heart Italian clinicians use artifical heart for Duchenne patient http://www.actionduchenne.org/viewarticle?news=94 Mon, 4 Oct 2010 00:00:00 BST USA STS Machine for Duchenne Dr Rhodes STS machine http://www.actionduchenne.org/viewarticle?news=93 Thu, 23 Sep 2010 00:00:00 BST Announcing the CureDuchenne Research Index Cure Duchenne publish the DMD Community's research and clinical trial index http://www.actionduchenne.org/viewarticle?news=92 Mon, 6 Sep 2010 00:00:00 BST Professor Dame Kay Davies on Biomarin Trial Message to Action Duchenne families http://www.actionduchenne.org/viewarticle?news=91 Wed, 4 Aug 2010 00:00:00 BST Update on Ataluren Data Presented at the International Congress on Neuromuscular Diseases Professor Kate Bushby updates results for Ataluren http://www.actionduchenne.org/viewarticle?news=89 Mon, 2 Aug 2010 00:00:00 BST Biomarin stops development of utrophin upregulation drug BioMarin Announces Results for Phase 1 Clinical Study of BMN 195 for Duchenne Muscular Dystrophy BMN 195 Program Discontinued due to Pharmaceutical and Pharmacokinetic Challenges http://www.actionduchenne.org/viewarticle?news=90 Mon, 2 Aug 2010 00:00:00 BST Andrew Lansley responds to our Lobby white paper Minister of State for Heatlh responds http://www.actionduchenne.org/viewarticle?news=88 Tue, 27 Jul 2010 00:00:00 BST Parent gains support of Shadow Health Minister Diana Johnson Action Duchenne lobby is successful in gaining senior MPs backing http://www.actionduchenne.org/viewarticle?news=87 Wed, 21 Jul 2010 00:00:00 BST Action Duchenne Charity Maiden Hurdle race held at Newton Abbot 15 times champion jockey Tony McCoy takes part in race named after Action Duchenne http://www.actionduchenne.org/viewarticle?news=86 Sun, 18 Jul 2010 00:00:00 BST Paul Maynard MP asks questions of Health Minister in Parliament Following our lobby in June Paul Maynard MP raises questions about Standards of Care for Duchenne http://www.actionduchenne.org/viewarticle?news=83 Tue, 13 Jul 2010 00:00:00 BST New NHS reforms may deprive more Duchenne families of medical care Andrew Lansley's proposals in White Paper offer nothing for Duchenne patients http://www.actionduchenne.org/viewarticle?news=84 Tue, 13 Jul 2010 00:00:00 BST Larry Phillips and his Grandad join Action Duchenne Lobby of Parliament ITN news report of Action Duchenne Lobby June 16th 2010 http://www.actionduchenne.org/viewarticle?news=85 Tue, 13 Jul 2010 00:00:00 BST Breakthrough results for new medicines for devastating childhood killer disease bring hope to families and mark 10th anniversary of decoding the Human Genome Genetic medicines now a reality within foreseeable future for the rare genetic condition Duchenne Muscular Dystrophy thanks to discovery of the Human Genome http://www.actionduchenne.org/viewarticle?news=82 Wed, 7 Jul 2010 00:00:00 BST New Early Day Motion gathers cross party support Second Early Day Motion since general election highlights Danish model of care and the need for all UK citizens to receive the same quality of care http://www.actionduchenne.org/viewarticle?news=81 Tue, 6 Jul 2010 00:00:00 BST Genzyme coninue to work with PTC on Ataluren Annamarie Dillon from Genzyme has sent Action Duchenne this recent update http://www.actionduchenne.org/viewarticle?news=78 Thu, 24 Jun 2010 00:00:00 BST Bernard, Rachel, Ben and Jacob write to their MP Write to your MP today to follow up our brilliant Lobby of Parliament http://www.actionduchenne.org/viewarticle?news=79 Thu, 24 Jun 2010 00:00:00 BST Dame Professor Kay Davies discusses Duchenne The Age of the Genome http://www.actionduchenne.org/viewarticle?news=80 Thu, 24 Jun 2010 00:00:00 BST Prosensa and GlaxoSmithKline initiate development of four additional products - exon 45, 52,53, and 55 Broadened program marks key inflexion in Prosensa’s progress to a fully integrated specialty pharma company http://www.actionduchenne.org/viewarticle?news=77 Wed, 23 Jun 2010 00:00:00 BST David and Nick are you listening? Action Duchenne Lobby of Parliament June 16th http://www.actionduchenne.org/viewarticle?news=76 Fri, 18 Jun 2010 00:00:00 BST Champion MP sponsors Early Day Motion in Parliament Dave Anderson MP sponsors EDM 206 http://www.actionduchenne.org/viewarticle?news=75 Tue, 15 Jun 2010 00:00:00 BST Top clinicians and parents of boys living with Duchenne voice their support for Lobby to Parliament Professors, Doctors and other Neuromuscular experts add their voice to call for further funding for best practice standards of care and research to find a cure for devastating condition http://www.actionduchenne.org/viewarticle?news=74 Mon, 14 Jun 2010 00:00:00 BST Action Duchenne lobbies Government for care levels that will extend Duchenne childrens’ lives by up to 15 years, in face of threatened cut backs Parents and boys living with Duchenne march on Downing Street to raise awareness of heartbreaking disease and demand an increase in investment to end to postcode Lottery for medical care http://www.actionduchenne.org/viewarticle?news=72 Wed, 9 Jun 2010 00:00:00 BST Parliament recognises Seeds of Hope Even a seed can make it to Parliament http://www.actionduchenne.org/viewarticle?news=73 Wed, 9 Jun 2010 00:00:00 BST Topline biopsy results from systemic treatment with AVI-4658 show an important step forward in race to find a treatment for Duchenne Muscular Dystrophy Action Duchenne proud to support AVI as it announces first ever reported generation of greater than 50% dystrophin-positive fibres in a patient following systemic administration of Exon Skipping drugs in a DMD patient http://www.actionduchenne.org/viewarticle?news=71 Thu, 3 Jun 2010 00:00:00 BST Lobby the new Coalition Government Dont Cut our Care and New Medicines for Duchenne http://www.actionduchenne.org/viewarticle?news=69 Fri, 28 May 2010 00:00:00 BST Action Duchenne selected as Charity for the Year by Northolt Methodist Church Church supports local family living with Duchenne Muscular Dystrophy http://www.actionduchenne.org/viewarticle?news=70 Fri, 28 May 2010 00:00:00 BST Follow Up Open Conference Call for Ataluren PTC Therapeutics and PPMD have scheduled a call on May 27, 2010 at 5:00pm eastern. The call will include PTC President Stuart Peltz and Chief Medical Officer for the ataluren trial, Langdon Miller, MD. http://www.actionduchenne.org/viewarticle?news=68 Thu, 20 May 2010 00:00:00 BST Action Duchenne hosts meeting in collaboration with UK Duchenne organisations and leading experts to raise awareness of care standards for Duchenne Muscular Dystrophy Recent document published in Lancet Neurology details best practice for the treatment and care of Duchenne patients which can extend the length and quality of life of patients by 10 to 15 years http://www.actionduchenne.org/viewarticle?news=67 Wed, 19 May 2010 00:00:00 BST Action Duchenne launches nationwide campaign Dinner4Duchenne to get friends Dining for Charity Trend for ‘pop-up’ restaurants fuels initiative from Action Duchenne where friends host paid for dinner parties http://www.actionduchenne.org/viewarticle?news=66 Thu, 13 May 2010 00:00:00 BST Carl ‘Action’ Tilson is presented with Mancunian of the Year award at informal Pride of Manchester Awards ceremony Carl collects his shiny award in front of proud family http://www.actionduchenne.org/viewarticle?news=65 Tue, 11 May 2010 00:00:00 BST Stockton-on-Tees Grandmother joins Action Duchenne’s nationwide campaign Dinner4Duchenne to get friends Dining for Charity Trend for ‘pop-up’ restaurants fuels initiative from Action Duchenne where friends host paid for dinner parties http://www.actionduchenne.org/viewarticle?news=64 Thu, 6 May 2010 00:00:00 BST Summary of Ataluren results issued Low dose of ataluren appears to show better results in 6 minute walk test http://www.actionduchenne.org/viewarticle?news=63 Tue, 20 Apr 2010 00:00:00 BST Carl receives letter of congratulation from Prime Minister Brown and is to be presented with his award Mancunian of the Year at local derby Manchester City v Manchester Utd Manchester born, terminally ill fund raiser and tireless champion for Duchenne Muscular Dystrophy receives accolades http://www.actionduchenne.org/viewarticle?news=62 Thu, 15 Apr 2010 00:00:00 BST Standards of Care - A Family Guide Do you have access to multi disciplinary expert medical care? http://www.actionduchenne.org/viewarticle?news=61 Wed, 31 Mar 2010 00:00:00 BST Prosensa Initiates Clinical Development of PRO044 in an Open Label Phase I/II Study Prosensa’s second clinical candidate for treatment of Duchenne Muscular Dystrophy http://www.actionduchenne.org/viewarticle?news=60 Tue, 30 Mar 2010 00:00:00 BST Update for patients and families on ataluren trial results Update from Genzyme http://www.actionduchenne.org/viewarticle?news=59 Fri, 26 Mar 2010 00:00:00 GMT Life Thru A Lens Exhibition Launch BBC Highlight Exhibition Launch http://www.actionduchenne.org/viewarticle?news=58 Thu, 25 Mar 2010 00:00:00 GMT Action Duchenne launches new notifications feature on Website Join the Action Duchenne Community http://www.actionduchenne.org/viewarticle?news=57 Thu, 18 Mar 2010 00:00:00 GMT Action Duchenne is proud and delighted to congratulation Carl 'Action' Tilson on becoming Mancunian of the Year 2010 Carl scoops top honours at Pride of Manchester Awards, beating Gary Barlow and Ryan Giggs http://www.actionduchenne.org/viewarticle?news=56 Mon, 15 Mar 2010 00:00:00 GMT A blooming great time to plant a winning sunflower for Action Duchenne ‘Seeds of Hope’ Appeal Action Duchenne launches nationwide appeal to get children to grow sunflowers to raise funds for charity http://www.actionduchenne.org/viewarticle?news=54 Thu, 11 Mar 2010 00:00:00 GMT Looks Good, Tastes Great, gets great reviews Carol Muskoron, Associate editor at www.allaboutyou.com, the online home of Good Housekeeping, House Beautiful, Prima, SHE, Country Living and Coast magazine reviews http://www.actionduchenne.org/viewarticle?news=55 Thu, 11 Mar 2010 00:00:00 GMT PTC answers questions on the cancelled Ataluren Trial Nick Catlin from Action Duchenne attended a conference call organised by PPMD in the USA with PTC therapuetics. Here are his notes from the meeting. http://www.actionduchenne.org/viewarticle?news=53 Fri, 5 Mar 2010 00:00:00 GMT PTC Therapuetics have suspended the current Ataluren Trial for Duchenne We have received this press release from PTC therapuetics concerning the Ataluren clinical trials http://www.actionduchenne.org/viewarticle?news=51 Thu, 4 Mar 2010 00:00:00 GMT Report of the Parent Project International research Conference in Rome Karl Bettelheim reports on the international research conference in Italy in February http://www.actionduchenne.org/viewarticle?news=50 Thu, 18 Feb 2010 00:00:00 GMT Action Duchenne launches new Cook Book “Looks Good, Tastes Great – Jewish Culinary Favourites” Charity launches second cook book after success of ‘Caledonian Kitchen’ with all proceeds to support research http://www.actionduchenne.org/viewarticle?news=49 Wed, 17 Feb 2010 00:00:00 GMT Edward Ackroyd stars in new film directed by David Jason Young Edward and his Mum Heidy are interviewed by GMTV http://www.actionduchenne.org/viewarticle?news=48 Thu, 11 Feb 2010 00:00:00 GMT Outstanding charity fundraiser Carl Tilson bids for Pride Of Manchester Awards 2009 - 2010 Manchester born, fund raiser and tireless champion for Duchenne Muscular Dystrophy in the running for Mancunion of the Year http://www.actionduchenne.org/viewarticle?news=47 Tue, 9 Feb 2010 00:00:00 GMT Sunday People highlights Carl's campaign Action Duchenne campaigner Carl Tilson, who is living with Duchenne Muscular Dystrophy, features in an article in the Sunday People supplement, Take it Easy http://www.actionduchenne.org/viewarticle?news=46 Sun, 31 Jan 2010 00:00:00 GMT Exciting new clinical trials to develop treatment for Duchenne Muscular Dystrophy - Press Release Leading pharmaceutical development company for serious diseases and medical conditions undertakes first steps in bringing new treatment for DMD to market http://www.actionduchenne.org/viewarticle?news=45 Tue, 26 Jan 2010 00:00:00 GMT Exciting new clinical trials to develop treatment for Duchenne Muscular Dystrophy Leading pharmaceutical development company for serious diseases and medical conditions undertakes first steps in bringing new treatment for DMD to market http://www.actionduchenne.org/viewarticle?news=44 Mon, 25 Jan 2010 00:00:00 GMT Initial results from systemic treatment with AVI-4658 positive Positive RNA and Protein Signals in first cohorts (groups) analysed http://www.actionduchenne.org/viewarticle?news=43 Wed, 6 Jan 2010 00:00:00 GMT Action Duchenne applauds publication of internationally agreed Standards of Care for the treatment of Duchenne Muscular Dystrophy First step is taken towards bringing an end to the current ‘postcode lottery’ of care for those living with Duchenne http://www.actionduchenne.org/viewarticle?news=42 Fri, 4 Dec 2009 00:00:00 GMT TREAT-NMD Advisory Committee for Therapeutics is launched to guide best potential new therapies for the treatment of neuro-muscular diseases to clinical trials Applications invited for comprehensive appraisals of new therapies by 15 December 2009 http://www.actionduchenne.org/viewarticle?news=41 Thu, 3 Dec 2009 00:00:00 GMT Action Duchenne and Duchenne Ireland funds further research for exon skipping therapies Recent successful trials of RNA-based drug provide foundations for new therapies for more patients with Duchenne Muscular Dystrophy http://www.actionduchenne.org/viewarticle?news=40 Thu, 26 Nov 2009 00:00:00 GMT Swine flu advice from Treat NMD Professor Hanns Lochmüller, Professor Volker Straub, Professor Kate Bushby http://www.actionduchenne.org/viewarticle?news=39 Mon, 23 Nov 2009 00:00:00 GMT Global excitement about potential treatments for Duchenne Dr. Matthew Wood reports on recent developments in exon skipping trials from the Oligonucleotide Therapeutic Society meeting held in Fukuoka, Japan in November. http://www.actionduchenne.org/viewarticle?news=38 Wed, 18 Nov 2009 00:00:00 GMT Halloween Ball raises over £40k for Action Duchenne charity Successful fundraising continues to support funding for research into Duchenne Muscular Dystrophy http://www.actionduchenne.org/viewarticle?news=37 Tue, 17 Nov 2009 00:00:00 GMT Action Duchenne funds appointment of new TREAT-Duchenne Coordinator New role to help promote Internationally agreed Standards of Care for Duchenne Muscular Dystrophy http://www.actionduchenne.org/viewarticle?news=36 Thu, 5 Nov 2009 00:00:00 GMT 7th Annual Duchenne International Conference, most successful yet Record attendance at Duchenne Conference http://www.actionduchenne.org/viewarticle?news=35 Thu, 29 Oct 2009 00:00:00 GMT AVI BioPharma Presents Updated Safety Data from Ongoing Systemic Trial of AVI-4658 at 7th Annual Action Duchenne International Conference Data shosw PMO well tolerated in penultimate dose cohort (10mg/kg) http://www.actionduchenne.org/viewarticle?news=34 Mon, 26 Oct 2009 00:00:00 GMT AVI BioPharma to Present Safety Update from Ongoing Systemic Trial of AVI-4658 at 7th Annual Action Duchenne International Conference Action Duchenne welcomes presentation of latest trial findings at annual conference http://www.actionduchenne.org/viewarticle?news=33 Thu, 22 Oct 2009 00:00:00 BST Exon Skipping Drug Prevents Muscle Wasting and Maintains Muscle Function in Severely Affected, Dystrophin Deficient Mice New Publication in Molecular Therapy Outlines Dramatic Effects in Animals Treated with Splice Switching PPMO, Demonstrates Promise for Treatment of Duchenne Muscular Dystrophy http://www.actionduchenne.org/viewarticle?news=32 Wed, 21 Oct 2009 00:00:00 BST Keith Harris and Orville Support Action Duchenne Fundraising Event Bicester Family organise fantastic charity auction event http://www.actionduchenne.org/viewarticle?news=31 Mon, 19 Oct 2009 00:00:00 BST Personalised medicine: patient groups call on regulators to set approval route from Science Business by Nuala Moran http://www.actionduchenne.org/viewarticle?news=30 Wed, 14 Oct 2009 00:00:00 BST Prosensa and GlaxoSmithKline form alliance to fight Duchenne Muscular Dystrophy Leiden and London, October 13 2009 http://www.actionduchenne.org/viewarticle?news=29 Tue, 13 Oct 2009 00:00:00 BST Sam joins MDEX exon skipping trial Danny Smith Sams Dad reports on the latest AVI/MDEX trial http://www.actionduchenne.org/viewarticle?news=28 Mon, 5 Oct 2009 00:00:00 BST TREAT-NMD, EMEA and patient group workshop on Antisense Oligonucleotide therapies in Duchenne muscular dystrophy (DMD) signals collaborative approach to the issues of personalised medicine Action Duchenne sees positive step forward to paving way for individual genomic (designer) drugs to treat Duchenne http://www.actionduchenne.org/viewarticle?news=27 Fri, 2 Oct 2009 00:00:00 BST AVI BioPharma Phase 1 Proof of Concept and Safety Data for AVI-4658 in Duchenne Muscular Dystrophy Featured in Lancet Neurology AVI-4658 Demonstrates Compelling Proof of Concept and Safety Profile for Pediatric Patients with DMD; Findings Support Progression to Current Systemic Use Trial http://www.actionduchenne.org/viewarticle?news=26 Thu, 3 Sep 2009 00:00:00 BST The Paper Mill at Apsley supports Action Duchenne with Carnival and Beer Festival over Bank Holiday Weekend National charity for Duchenne Muscular Dystrophy to benefit from bank holiday family fun http://www.actionduchenne.org/viewarticle?news=24 Tue, 25 Aug 2009 00:00:00 BST Action Duchenne supports Walton report findings and renews calls for ‘Centres of Excellence’ approach to treatment of muscular dystrophy Walton Report confirms ‘postcode lottery’ to life expectancy for patients living with muscular dystrophy http://www.actionduchenne.org/viewarticle?news=25 Tue, 25 Aug 2009 00:00:00 BST V Inspire Awards nominate a genius volunteer http://www.actionduchenne.org/viewarticle?news=23 Tue, 18 Aug 2009 00:00:00 BST Action Duchenne Replies to Health Minister Nick Catlin our CEO replies to Gillian Merron at the Department of Heatlh http://www.actionduchenne.org/viewarticle?news=22 Fri, 7 Aug 2009 00:00:00 BST Patron Helena Bonham Carter supports Action Duchenne in its calls for the Government to follow recommendations of the House of Lords Genomic Medicine Report Action Duchenne renews calls for ring fenced funding and more Centres of Excellence for the treatment of Duchenne Muscular Dystrophy in light of Government report http://www.actionduchenne.org/viewarticle?news=21 Thu, 30 Jul 2009 00:00:00 BST AVI BioPharma and Action Duchenne Team Up to Support Advancement of PMO-based Therapeutics for Treatment of Duchenne Muscular Dystrophy Action Duchenne provides $1.2m to support continuing development of drugs to treat Duchenne Muscular Dystrophy http://www.actionduchenne.org/viewarticle?news=20 Tue, 28 Jul 2009 00:00:00 BST Action Duchenne supports bid for Pride of Britain Nomination by Carl ‘Action’ Tilson Manchester terminally ill fund raiser bids for nomination to raise awareness of little known disease that is the biggest genetic childhood killer http://www.actionduchenne.org/viewarticle?news=18 Wed, 22 Jul 2009 00:00:00 BST Genomics Medicine Campaign Action Duchenne launches campaign to ask the Government to publish White paper http://www.actionduchenne.org/viewarticle?news=19 Wed, 22 Jul 2009 00:00:00 BST Action Duchenne supports findings of Government Report on Genomic Medicine and renews calls for ring fenced funding and more Centres of Excellence Single-gene disorders must not be left behind as new Genomic Medicines start to address more complex diseases http://www.actionduchenne.org/viewarticle?news=17 Fri, 17 Jul 2009 00:00:00 BST Swine Flu and Duchenne How to deal with Swine Flu outbreak http://www.actionduchenne.org/viewarticle?news=13 Fri, 3 Jul 2009 00:00:00 BST Action Duchenne lobbies Northern Ireland Assembly for Centres of Excellence and ‘Best Practice’ standards of medical care for all living with Duchenne Muscular Dystrophy Parents and boys living with Duchenne march on Stormont to raise awareness of heartbreaking disease and demand an end to sub-standard care in Northern Ireland http://www.actionduchenne.org/viewarticle?news=16 Thu, 18 Jun 2009 00:00:00 BST Action Duchenne lobbies Government for ‘Best Practice’ standards of medical care for all and for funding to develop a cure for Duchenne Muscular Dystrophy Parents and boys living with Duchenne march on Downing Street to raise awareness of heartbreaking disease and demand an end to Postcode Lottery for medical care http://www.actionduchenne.org/viewarticle?news=15 Thu, 11 Jun 2009 00:00:00 BST Action Duchenne lobbies Welsh Assembly for Centres of Excellence and ‘Best Practice’ standards of medical care for all living with Duchenne Muscular Dystrophy Parents and boys living with Duchenne march on the Senedd to raise awareness of heartbreaking disease and demand an end to sub-standard medical care in Wales http://www.actionduchenne.org/viewarticle?news=14 Fri, 5 Jun 2009 00:00:00 BST Action Duchenne calls for an end to the scandalous Postcode Lottery of treatment for boys and young men living with Duchenne Muscular Dystrophy Standards of Care Survey shows that over a third of all parents of children living with Duchenne feel that their child receives sub-standard medical care http://www.actionduchenne.org/viewarticle?news=12 Wed, 3 Jun 2009 00:00:00 BST Action Duchenne lobbies Scottish Parliament for Centres of Excellence and ‘Best Practice’ standards of medical care for all living with Duchenne Muscular Dystrophy Parents and boys living with Duchenne march on Holyrood to raise awareness of heartbreaking disease and demand an end to sub-standard care in Scotland http://www.actionduchenne.org/viewarticle?news=11 Mon, 1 Jun 2009 00:00:00 BST World-renowned cellist Julian Lloyd Webber pledges support for Action Duchenne Famous musician becomes latest patron for Action Duchenne, the Charity that supports families and those living with Duchenne http://www.actionduchenne.org/viewarticle?news=10 Thu, 21 May 2009 00:00:00 BST Action Duchenne combines social networking with e-commerce for innovative new website Action Duchenne builds online interactive community to help and support families living with Duchenne Muscular Dystrophy http://www.actionduchenne.org/viewarticle?news=9 Thu, 14 May 2009 00:00:00 BST Race Against Time Campaign Lets get lobbying http://www.actionduchenne.org/viewarticle?news=8 Tue, 12 May 2009 00:00:00 BST Exon Skipping Review April 2009 from Günter Scheuerbrandt http://www.actionduchenne.org/viewarticle?news=7 Fri, 8 May 2009 00:00:00 BST Action Duchenne launches ‘Life Thru a Lens’ photography project to raise awareness of Duchenne Muscular Dystrophy Innovative photography project aims to show what living life with Duchenne is like by those whose lives are affected http://www.actionduchenne.org/viewarticle?news=6 Thu, 7 May 2009 00:00:00 BST Action Duchenne launches Celebrity Scottish Recipe Book - The Caledonian Kitchen Scottish recipe book featuring favourite recipes from over forty celebrities and chefs from forty top Scottish restaurants raises funds for Duchenne Muscular Dystrophy charity http://www.actionduchenne.org/viewarticle?news=4 Mon, 16 Mar 2009 00:00:00 GMT Action Duchenne announces new patent registry with Duchenne Ireland Action Duchenne announces new patent registry with Duchenne Ireland http://www.actionduchenne.org/viewarticle?news=3 Wed, 18 Feb 2009 00:00:00 GMT St Valentine’s Day 10K Love Runs to be held across the UK for Action Duchenne Muscular Dystrophy Charity holds 7th annual nationwide series of ‘Love Runs’ to raise money for research http://www.actionduchenne.org/viewarticle?news=1 Wed, 11 Feb 2009 00:00:00 GMT AVI publishes latest Exon skipping clinical trial results Latest drug trial shows potential RNA therapeutic treatment for Duchenne Muscular Dystrophy, says Action Duchenne http://www.actionduchenne.org/viewarticle?news=2 Wed, 21 Jan 2009 00:00:00 GMT