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January 2012
Action Duchenne joins healthcare professionals in opposing Health and Social Care Bill
- Article Posted: 31 January 2012
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Charity claims proposals will seriously affect current standards of care for people with life threatening neuromuscular conditions
Free and highly subsidised days out in London
- Article Posted: 31 January 2012
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Shape Arts has tickets and drivers to make sure you have a good day out
Making a mark in Northern Ireland
- Article Posted: 27 January 2012
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Parents receive overwhelming support!
First Data choose Action Duchenne as Charity of the Year
- Article Posted: 20 January 2012
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The Nottingham based company will support AD throughout 2012
National Meeting - April 21st in Birmingham
- Article Posted: 17 January 2012
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Book now for our one day free conference
Grandparents collection tin surprise!
- Article Posted: 16 January 2012
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North East grandparents gain more support than expected.
Making steps climbing to help Action Duchenne.
- Article Posted: 15 January 2012
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North East families determined to make a difference.
Charity of the Year with Virgin Media
- Article Posted: 12 January 2012
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Virgin Media branch in Scotland supports Action Duchenne
Hallam family and friends raise over £10,000 for Action Duchenne in 2011
- Article Posted: 11 January 2012
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A variety of events raise a great total!
Splashing Dook and Bag Pack Success
- Article Posted: 03 January 2012
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Scottish families and supporters help raise £3,000 over New Year!
Carl ‘Action’ Tilson to be one of the Olympic Torch Bearers in 2012
- Article Posted: 03 January 2012
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Seasoned campaigner for Action Duchenne gains yet another accolade
December 2011
Action Duchenne patron honoured with CBE
- Article Posted: 31 December 2011
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Helena Bonham Carter receives award in New Years Honours
Overwhelming Score4Duchenne Support
- Article Posted: 31 December 2011
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Dundee FC helps raise awareness and support Action Duchenne.
Annual Raffle Draw winners- well done!!!!
- Article Posted: 22 December 2011
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Thank you for taking part
Text santa this Christmas!
- Article Posted: 21 December 2011
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Christmas text campaign
Help Santa deliver his toys and support Action Duchenne with new Christmassy iPhone & iPad App from Rantmedia
- Article Posted: 15 December 2011
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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
Sian Lang and Friends hold coffee morning raising £155.75
- Article Posted: 15 December 2011
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Sian Lang and Friends hold coffee morning raising £155.75
Prosensa Updates on Patent Position
- Article Posted: 09 December 2011
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Prosensa confirms patents for exon skipping
J E Network website contract
- Article Posted: 06 December 2011
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ACP and J E Network both helping to support Action Duchenne
Upwood Village Cambridgeshire Summer Ball Raise £500 for Action Duchenne
- Article Posted: 05 December 2011
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Upwood Village Summer Ball Raise £500 for Action Duchenne
Esther, Colin Mayes and their team Raise £2180.74 from11collection days this year
- Article Posted: 05 December 2011
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Esther, Colin Mayes and their team Raise £2180.74 from 11collection days this year
Prosensa to Receive $1.5m from Charley’s Fund
- Article Posted: 02 December 2011
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Skipping of Exon 52 in Duchenne Muscular Dystrophy Patients
November 2011
Ataluren update from PTC Therapeutics
- Article Posted: 30 November 2011
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Open-label trial confirmed for those who participated in Phase 2b trial
Bank of England staff raise £36,645.11 for Action Duchenne
- Article Posted: 25 November 2011
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Bank of England staff raise £36,645.11 for Action Duchenne
GSK announces new US clinical trial
- Article Posted: 22 November 2011
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Study DMD114876: A Clinical Study to Assess Two Doses of GSK2402986 in Subjects With Duchenne Muscular Dystrophy (DMD)
Thousands of £££s roll in as people around the country raise money for Action Duchenne
- Article Posted: 16 November 2011
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Bumper ideas spark off charity events in the lead up to Bonfire Night
Highland dancer’s Long Hair raises money for Action Duchenne
- Article Posted: 15 November 2011
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Chloe McClean stages sponsored hair cut that brings in £1,200 for charity
Irish run raises money for Action Duchenne
- Article Posted: 15 November 2011
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Father raises over £3,000 from Dublin Marathon to help boys with Duchenne
Include Duchenne’s Decipha literacy programme aimed at boys living with Duchenne Muscular Dystrophy wins The National Lottery Award for best education project
- Article Posted: 09 November 2011
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Mother wins National Lottery Award for ground breaking project to help her son and many others like him to learn to read
Include Duchenne interviewed for The Mirror
- Article Posted: 08 November 2011
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More coverage for Include Duchenne for National Lottery Award Win
Action Duchenne wins national lottery award live on BBC1
- Article Posted: 06 November 2011
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Include Duchenne project wins best Education Project at The National Lottery Awards 2011
Duchenne Newborn Screening in Wales Withdrawn
- Article Posted: 03 November 2011
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Announced by the Welsh Government today
Joint statement from Action Duchenne and Muscular Dystrophy Campaign
- Article Posted: 03 November 2011
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Families devastated as life-changing test for babies is withdrawn
DMD Heart Protection Trial is now recruting at five centres
- Article Posted: 03 November 2011
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Action Duchenne supports long term heart medication trial funded by the British Heart Foundation
Duchenne inspired photographic exhibition gets coverage on BBC
- Article Posted: 01 November 2011
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Tyran Hawthorn’s exhibition opening a great success
International Duchenne Conference 2011 Webinar
- Article Posted: 01 November 2011
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Register today to take part online
October 2011
Boris challenged on welfare cuts by disabled campaigners at Olympic event
- Article Posted: 21 October 2011
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Mayor heckled on the coalition's cuts to public services, and ongoing welfare reforms
Listen now as Action Duchenne Trustee joins the debate on Radio 5 Live Your Call
- Article Posted: 20 October 2011
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Mark Silverman gives views on care for Duchenne on ‘Are GPs too Powerful’ phone in debate
UK National Institute for Health and Clinical Excellence officially endorses standards of care for Duchenne Muscular Dystrophy
- Article Posted: 20 October 2011
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Accreditation is key to broadening the reach of critical services as they become available on the NHS
Young artist living with Duchenne shows first exhibition at University of Portsmouth in support of Action Duchenne
- Article Posted: 19 October 2011
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Talented artist and photographer chooses his life limiting condition as theme for first collection
International Duchenne Research Conference
- Article Posted: 19 October 2011
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Updates to Agenda and we now have FAQ's from our Researchers speaking at the Event
National newspaper asks why exon skipping trials were not continued
- Article Posted: 17 October 2011
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The Telegraph reports on trials for a cure for Duchenne Muscular Dystrophy
Clinical Development Programme Update from GSK
- Article Posted: 14 October 2011
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John Kraus and Padraig Wright, GlaxoSmithKline
International Conference Agenda Upated
- Article Posted: 13 October 2011
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Comedienne Francesca Martinez will perform at Gala Dinner
What next for the NHS?
- Article Posted: 12 October 2011
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Health and Social Care Bill passes the Lords
Take Action Today to Protect the NHS
- Article Posted: 11 October 2011
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Today members of the House of Lords are debating the future of the NHS
Duchenne petition
- Article Posted: 10 October 2011
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Sign e-petition for Duchenne research
September 2011
Only Watch raises over 4m Euros for Duchenne Research
- Article Posted: 30 September 2011
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Luc and Monique Pettavino hold watch sale in Monaco
Action Duchenne features on BBC national lottery show
- Article Posted: 26 September 2011
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Action Duchenne's Decipha programme highlighted during preview of lottery award finalists
Channel swimmer raises £10k
- Article Posted: 14 September 2011
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Lisa Auchinvole has to cut short channel swim but reaches goal to raise funds for Action Duchenne
Manchester City Supporters Club choose Action Duchenne for charity of the year
- Article Posted: 14 September 2011
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Supporters of iconic football team select Duchenne charity
Chris Spowart completes Wales Ironman despite bad weather
- Article Posted: 13 September 2011
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First ever Wales Ironman completed during last throes of Hurricane Katia
Prosensa Advances Three Exon Skipping Candidates for Duchenne Muscular Dystrophy into the Next Development Stage
- Article Posted: 13 September 2011
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Prosensa to receive up to £27M in development and milestone payments from GSK
Northern Ireland families run highly successful Collect4Duchenne campaign
- Article Posted: 13 September 2011
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Collect4Duchenne Day nets nearly £1000
£3300 raised at Karioke night in Strabane
- Article Posted: 13 September 2011
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Local family raises the roof for Action Duchenne
Update on Ataluren
- Article Posted: 09 September 2011
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Statement from PTC
Action Duchenne International Conference Agenda
- Article Posted: 09 September 2011
- Permanent Link
Download the Conference Agenda
Action Duchenne calls for second round votes for National Lottery Awards Finals
- Article Posted: 08 September 2011
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Charity’s ‘Include Duchenne’ nominated for ‘Best Education project’
Kilimanjaro climb peaks fundraising success
- Article Posted: 05 September 2011
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Climb of a lifetime is pinnacle of fantastic fundraising efforts for two Lancashire ladies
Genzyme ataluren in nmDBMD Programme Update September 2011
- Article Posted: 05 September 2011
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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.
Vote now for Include Duchenne in the National Lottery Awards
- Article Posted: 02 September 2011
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Second and final round of voting to decide the winner in the National Lottery Awards starts now
Scottish Highland Dancing community raise £4000 for Action Duchenne from ‘Assemble and Leap’ concert
- Article Posted: 01 September 2011
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Concert held by Scottish Official Board of Highland Dancing donates proceeds to Action Duchenne and MS Scotland
August 2011
Success for National Collect4Duchenne day in the North East
- Article Posted: 31 August 2011
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Grandparent Joy Maxwell and friends raise over £300 in Tynemouth and Morrisons in Alnwick in just three hours
Gym club owner to swim channel for childhood friend’s son
- Article Posted: 30 August 2011
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Lisa Auchinvole, 40, aims to raise £10,000 to support Action Duchenne charity for muscle wasting disease after friend’s son diagnosed
Race night at Greenock Morton FC Supporters Club raises over £1,000
- Article Posted: 23 August 2011
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The family who inspired sponsored bag-packs around Scotland continues pledge to support Action Duchenne
Association of Credit Professionals supports National Dress Down 4 Duchenne Day on 23 September
- Article Posted: 22 August 2011
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Action Duchenne signs up corporate sponsor for National campaign
Allstate Northern Ireland raises £300 for Action Duchenne
- Article Posted: 15 August 2011
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Book Sale hits the mark!
Virgin Media auctions football memorabilia to support Action Duchenne
- Article Posted: 15 August 2011
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Media giants Virgin Media continue to help
Fife man to do sky dive for Action Duchenne
- Article Posted: 11 August 2011
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Cancelled sky dive due to take place this Sunday, please pledge support
Action Duchenne pays tribute to brave Stuart Wickison aged 23
- Article Posted: 10 August 2011
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Stuart Wickison lived with Duchenne muscular dystrophy and sadly took his own life on Tuesday 2nd August .
Action Duchenne launches new Muscle Centre Monitoring Project
- Article Posted: 09 August 2011
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New website will bring treatment information closer to home for families and young people living with Duchenne Muscular Dystrophy
Duchball Rally 2011
- Article Posted: 08 August 2011
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Family & Friends burn rubber in aid of Duchenne Muscular Dystrophy
Newport - Fire Brigade Car Wash & Donations
- Article Posted: 08 August 2011
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Family & Friends team up with the Fire Brigade in aid of Action Duchenne
Ilfracombe sees mass Lantern Release to raise awareness and funds for Duchenne Muscular Dystrophy
- Article Posted: 01 August 2011
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Over 700 Chinese Lanterns release in aid of Action Duchenne
July 2011
North East company nominates Action Duchenne as charity of the month!
- Article Posted: 29 July 2011
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Local supporters group calls for new members
News coverage highlights research progress
- Article Posted: 26 July 2011
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Action Duchenne families and Chair speak out about the need for further work to build on success.
Promising results published today in the Lancet on Exon Skipping to treat Duchenne Muscular Dystrophy tinged with disappointment as extension study is not undertaken
- Article Posted: 25 July 2011
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Delays to development of breakthrough treatments brings bitter disappointment to Duchenne families
Big Lottery Fund awards Action Duchenne £500,000 for new community programme
- Article Posted: 19 July 2011
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Charity’s pioneering ‘Takin’ Charge’ project helps young men with rare genetic disease prepare for adulthood
Local family enlists the help of friends to raise over £20,000 for Duchenne Muscular Dystrophy Charities
- Article Posted: 19 July 2011
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Golf day with a difference
Acrewood Nursery in Stirling holds BBQ and raises over £450
- Article Posted: 15 July 2011
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Stirling efforts of nursery raise more money for Action Duchenne after successful Seeds of Hope campaign
Parent Project MD Conference 2011
- Article Posted: 15 July 2011
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Duchenne Charity PPMD holds international conference in Baltimore US
Edinburgh Fringe Comedy shows preview in London for Action Duchenne
- Article Posted: 12 July 2011
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Get tickets now for two hilarious comedy shows before they hit the Edinburgh fringe and support Action Duchenne - 14 July
Home of premier league football hosts charity ball for Action Duchenne
- Article Posted: 12 July 2011
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Fundraising duo have raised over £11k already this year!
Morning Star highlights plight of those living with Duchenne
- Article Posted: 07 July 2011
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National paper runs two page spread about living with Duchenne
9th International Duchenne Conference
- Article Posted: 05 July 2011
- Permanent Link
Sign up today
June 2011
NAC Responds to SEN Green Paper
- Article Posted: 30 June 2011
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SEN and Disability Green Paper
Paul Chandler Completes London to Paris Bike ride
- Article Posted: 29 June 2011
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Congratulations Paul!
Holyrood lobby highlights standards of care
- Article Posted: 29 June 2011
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Action Duchenne at the Scottish Parliament
Action Duchenne stages annual lobby to Scottish Parliament to demand decent standards of care for Duchenne patients and end to the postcode lottery
- Article Posted: 28 June 2011
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Families and supporters unite in their call for further funding to provide best practice standards of care and research to find a cure
Our most successful ever Bag Pack!
- Article Posted: 27 June 2011
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A whopping £1100 raised at Morrisons in Byker in the North East.
Include Duchenne scooped most votes in Best Education Project in National Lottery Awards
- Article Posted: 23 June 2011
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But we still need your support again in September - watch this space for details
TV cameras out as Action Duchenne lobbies the Welsh Assembly
- Article Posted: 22 June 2011
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A positive day with many families meeting their newly appointed AMS for the first time
Association of Credit Professionals spread the word for Action Duchenne
- Article Posted: 22 June 2011
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Professional body promotes Action Duchenne to its membership to raise awareness
Your chance to tell us what you think about Medical Research for Duchenne
- Article Posted: 22 June 2011
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How do you decide to take part – a new study at Newcastle University
Action Duchenne stages annual lobby at Welsh Assembly to demand decent standards of care for Duchenne patients and end to the postcode lottery
- Article Posted: 21 June 2011
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Families and supporters unite in their call for further funding to provide best practice standards of care and research to find a cure
Nancy Drew and the Mystery of the Whole Genome
- Article Posted: 17 June 2011
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Gene Sequencing
AVI clinical trial update
- Article Posted: 16 June 2011
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AVI BioPharma Provides Update on Initiation of Eteplirsen Phase 2 Clinical Trial
Action Duchenne Westminster Lobby goes from strength to strength
- Article Posted: 16 June 2011
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Over 20 boys & young men living with Duchenne match on Downing Street
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
- Article Posted: 06 June 2011
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Families and supporters unite in their call for further funding to provide best practice standards of care and research to find a cure
Runners converge at Edinburgh Marathon Festival to support Action Duchenne!
- Article Posted: 04 June 2011
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One of the world’s top 10 city marathon venues becomes hot magnet for fund-raising activities
Family raises over £2,000 for Action Duchenne
- Article Posted: 04 June 2011
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Determination to succeed makes National headlines
Father joins celebs in London to Paris cycle race to raise funds for a cure
- Article Posted: 02 June 2011
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Paul Chandler achieves perfect physical fitness to fight for a cure
May 2011
‘Include Duchenne’ project Decipha gets to finals of the National Lottery Awards 2011
- Article Posted: 31 May 2011
- Permanent Link
Vote now to ensure Decipha wins and appears on National TV
Action Duchenne supports the 38 Degrees campaign to Save the NHS
- Article Posted: 30 May 2011
- Permanent Link
Members and supporters of the charity urged to join more than 400,000 people who have already signed the high profile petition
Latest update from Prosensa
- Article Posted: 24 May 2011
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Prosensa’s Clinical Development Plan Update – May 2011
Clinical Trials update from GSK - some trials are still recruiting
- Article Posted: 24 May 2011
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GSK’s Clinical Development Plan for DMD – May 2011
NHS reforms - listening exercise
- Article Posted: 23 May 2011
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Families have until 31 May to make their views known
Pedal power holds the key to fundraising success
- Article Posted: 17 May 2011
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Stuart Giles is recruiting for this year's Pedal for Scotland
Banana raises awareness for Action Duchenne in the Great Manchester Run
- Article Posted: 17 May 2011
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James Stockton gets his photo in the Daily Mirror
Thousands March on parliament in the Hardest Hit protest
- Article Posted: 11 May 2011
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UK DPC organises day of protest
Upton Junior School rallies together to support Action Duchenne
- Article Posted: 10 May 2011
- Permanent Link
Kent school children raise £3325 with sponsored events
Action family starts running to stop wasting
- Article Posted: 09 May 2011
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Children join the Great North Run for Action Duchenne
Update on the Therapeutic approaches to muscular dystrophy
- Article Posted: 06 May 2011
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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
Daily treatment with SMT C1100 dramatically reduces muscular dystrophy symptoms in mdx mouse
- Article Posted: 05 May 2011
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Utrophin upregulator could be another step closer to providing a viable treatment for Duchenne patients says Action Duchenne
Ataluren update from Genzyme
- Article Posted: 02 May 2011
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Follow-on open label clinical study announced for previous trial participants
April 2011
ACE-031 statement from Acceleron and Shire
- Article Posted: 25 April 2011
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Clinical trial suspended; intention is to start a new study after discussions with regulatory agencies
Local primary school clubs together for little Travis and raises £250 for Action Duchenne!
- Article Posted: 21 April 2011
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Action Duchenne is now £250 better off thanks to the ingenuity of Chapel Road Primary School.
Brownie points go to cub scouts for supporting Action Duchenne
- Article Posted: 21 April 2011
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5th Darlington Cub Scout Group took part in a collective marathon to raise awareness and funds for Action Duchenne
GSK2402968 Clinical Development Programme Update
- Article Posted: 15 April 2011
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Forty-Eight Week Follow-Up Data from a Phase I/IIa Extension Study of PRO051/GSK2402968 in Subjects with Duchenne Muscular Dystrophy
AVI BioPharma Receives Approval of Nonproprietary Name Eteplirsen for Lead Duchenne Muscular Dystrophy Therapeutic Candidate, AVI-4658
- Article Posted: 12 April 2011
- Permanent Link
AVI announce Phase 2 trial in June
AVI BioPharma to Present Data for RNA-Based Duchenne Muscular Dystrophy Drug Candidate at the 63rd Annual Meeting of the American Academy of Neurology
- Article Posted: 12 April 2011
- Permanent Link
AVI presents data at Conference in the US
Action Duchenne supports UK Disabled People’s Council Day of Protest on 11th May ahead of Action Duchenne lobby on 15 June
- Article Posted: 11 April 2011
- Permanent Link
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
£2.5m research grant for Duchenne Muscular Dystrophy awarded to Oxford researchers
- Article Posted: 08 April 2011
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Funding for pioneering research into gene therapy by Action Duchenne has led to further funds for research into this life limiting disease
Action Duchenne welcomes backtrack on NHS plans
- Article Posted: 06 April 2011
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Charity states that government plans that threaten the most vulnerable must now be re-examined, young men to lobby parliament for access to treatment
Phrixus Pharmaceuticals, Inc. announces $890,000 in NIH funding for its programs in Duchenne Muscular Dystrophy and heart failure
- Article Posted: 05 April 2011
- Permanent Link
Awards to fund respiratory studies for Carmeseal™ in Duchenne muscular dystrophy and mechanism of action studies in heart failure
March 2011
Spring is here! Join in the Easter fun at the ‘Miles for Muscles’ charity event
- Article Posted: 31 March 2011
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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.
Genzyme Atalauren update
- Article Posted: 30 March 2011
- Permanent Link
Genzyme Ataluren Programme March 2011 update issued
Schools and their teachers make great strides in supporting Duchenne boys
- Article Posted: 29 March 2011
- Permanent Link
Gavin Richardson raises over £300 in the Alloa half marathon
Local family bags £623 for Action Duchenne
- Article Posted: 28 March 2011
- Permanent Link
by offering sponsored packing service at Morrisons!
Personalised Medicine Conference – Wellcome Collection Conference Centre, London
- Article Posted: 22 March 2011
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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
Action Duchenne appoints new Campaign and Advocacy Manager
- Article Posted: 21 March 2011
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Charity increases pressure on UK government to support treatment research and care for those living with Duchenne Muscular Dystrophy
Action Duchenne lobbies Welsh Assembly for Rare Disease Day
- Article Posted: 17 March 2011
- Permanent Link
Great support for Rare Disease UK
Young GB Athlete Richard Goodman is Ambassador for Action Duchenne
- Article Posted: 16 March 2011
- Permanent Link
Olympic hopeful raises awareness of charity work by championing cause
Charity night – live music and disco at the Delacroix pub (Derry)
- Article Posted: 14 March 2011
- Permanent Link
Come and boogie on down for a great cause!
Action Duchenne supports Rare Disease UK national strategy for lobbying Government for cohesive treatment for those with rare diseases
- Article Posted: 03 March 2011
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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
Southend United chooses Leon Thorn as mascot for match
- Article Posted: 03 March 2011
- Permanent Link
Local fan living with Duchenne gets the chance to support his team
CARE-NMD launches new project website - visit now
- Article Posted: 01 March 2011
- Permanent Link
Online resources made available to patients, families and clinicians across Europe on standards of care for DMD
Funds for Action Duchenne as Xbox fans blast aliens with new game
- Article Posted: 01 March 2011
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Developer dad donates proceeds of sales from new Xbox 360 game to charity
February 2011
Northolt Methodist Church raises over £1000 for Action Duchenne
- Article Posted: 28 February 2011
- Permanent Link
Churchgoers’ successful fundraising activities benefit chosen charity of the year
Love Runs raise over £40k to help find a cure!
- Article Posted: 25 February 2011
- Permanent Link
Action Duchenne Love Runs a big hit with runners
Quality of Standards of Care
- Article Posted: 21 February 2011
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Join the focus group to give your opinions on Quality of Care
Rising UK athletics star becomes an Ambassador for Action Duchenne
- Article Posted: 19 February 2011
- Permanent Link
Richard Goodman, a top 3 ranked 3,000m and 5,000m runner in his age group, becomes an ambassador for Action Duchenne
Disability Living Allowance Reform
- Article Posted: 16 February 2011
- Permanent Link
Act Now! Deadline extended to 18th February!
Dr Karl Bettelheim Reviews Duchenne Research
- Article Posted: 15 February 2011
- Permanent Link
Action Duchenne Trustee Dr Karl Bettelheim updates on the very latest Duchenne Research
Action Duchenne’s “Life Thru a Lens” photographic exhibition and ground-breaking film to be on show in two places in one week
- Article Posted: 15 February 2011
- Permanent Link
Whickham Villa Tues 15 Feb and Newcastle Thurs 17 Feb
Take part in the 2011 South Coast Duchball rally and raise funds for Action Duchenne
- Article Posted: 11 February 2011
- Permanent Link
July car rally sets fundraising target of £6000
Action Duchenne appalled that MP Paul Maynard was mocked for his disability during parliamentary debate
- Article Posted: 10 February 2011
- Permanent Link
Equalities chief Trevor Phillips told the BBC that Speaker John Bercow should look into the matter
Action Duchenne supports Rare Disease Day 2011
- Article Posted: 10 February 2011
- Permanent Link
Join the National Lobbies - download our lealfet
Action Duchenne Love Runs – there’s still time to register and be officially timed
- Article Posted: 08 February 2011
- Permanent Link
And some last minute hints and tips for performing at your best on the big day
Read about Genius Film project in Arts Professional magazine
- Article Posted: 04 February 2011
- Permanent Link
Sophie Medd writes about Duchenne – The Forgotten Generation for professional trade magazine
Stop Press - Pilot Trials Now IGF-1 trial starts
- Article Posted: 04 February 2011
- Permanent Link
Pilot Trials Now, part of CharleysFund forges ahead with ground breaking trial
Hartlepool primary school fundraising success
- Article Posted: 04 February 2011
- Permanent Link
Pupils and staff at primary school raise over £1000 with Christmas CD, wishing well and Boxing Day sea plunge
Call to Action – Action Duchenne supports Rare Disease Day 2011
- Article Posted: 03 February 2011
- Permanent Link
28 February is Rare Disease Day – support required for Lobby Days
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
- Article Posted: 02 February 2011
- Permanent Link
Newcastle venue first to screen Duchenne – The Forgotten Generation in 201
January 2011
'About a boy' - U Magazine tackles Duchenne Muscular Dystrophy
- Article Posted: 29 January 2011
- Permanent Link
Oxfordshire family highlight concerns over government funding cuts
Action Duchenne is recruiting a Campaign and Advocacy Manager
- Article Posted: 27 January 2011
- Permanent Link
Act now if you would like to join a dynamic team and really make a difference
Action Duchenne Love Runs - Time to step up the training
- Article Posted: 25 January 2011
- Permanent Link
But its not too late to join in the fun and raise money for a great cause
Sales of Caledonian Cookbooks soar in Virgin Media fundraising efforts
- Article Posted: 19 January 2011
- Permanent Link
Scottish couple raise awareness and much needed funds thanks to Virgin Media staff
Current postcode lottery of care will worsen under new NHS reforms, says Action Duchenne
- Article Posted: 18 January 2011
- Permanent Link
Services for our children are already poor, the fast rate of change proposed will leave the vulnerable even further behind
‘Action’ Tilson goes from strength to strength as he is named finalist for yet another award
- Article Posted: 13 January 2011
- Permanent Link
Carl Tilson is a National Finalist for THE SHOUT AWARD from vinspired.
Disability Living Allowance reform – You need to act now – Time is of the Essence!
- Article Posted: 11 January 2011
- Permanent Link
Residential Education Transport cuts will hit those living with Duchenne
December 2010
The Caledonian Kitchen scoops award in the Gourmand World Cookbook Awards 2010
- Article Posted: 24 December 2010
- Permanent Link
Beautifully written and produced charity recipe book flies flag for Scotland and Action Duchenne
Genzyme Ataluren Programme Update
- Article Posted: 23 December 2010
- Permanent Link
Genzyme issues Programme Update to DBMD community
Heartwarming 10K ‘Action Duchenne Love Run’ limbers up for ninth successful year
- Article Posted: 21 December 2010
- Permanent Link
Action Duchenne charity runs are held around the country to raise money for research into life limiting children’s disease
The Action Duchenne Annual Raffle Draw
- Article Posted: 20 December 2010
- Permanent Link
The Action Duchenne Annual Raffle Draw
A new initiative to promote high-quality care for Duchenne
- Article Posted: 17 December 2010
- Permanent Link
Update from CARE-NMD
Sir David Jason film starring Edward Ackroyd wins clean sweep at Awards
- Article Posted: 17 December 2010
- Permanent Link
Duchenne boy stars in film which takes top honours at Monaco Film Festival
Dr. Karl A Bettelheim reviews recent research relating to Duchenne Muscular Dystrophy in his blog
- Article Posted: 15 December 2010
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Retired microbiologist/biochemist with a grandson with Duchenne explains research in easy to understand language
Action Duchenne joins MDC in condemnation of Disability Living Allowance reform
- Article Posted: 14 December 2010
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Residential Education Transport cuts could hit those living with Duchenne
Prizes drawn for Action Duchenne's Annual Raffle this Friday
- Article Posted: 13 December 2010
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Check your numbers on Friday
Update from the MDEX Consortium
- Article Posted: 10 December 2010
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MDEX consortium extends membership to include experts from other countries
New trial for skipping exon 51 announced by GSK
- Article Posted: 10 December 2010
- Permanent Link
First wave sites in France, Germany and Republic of Korea
Illminster school appoints Action Duchenne its charity of the year
- Article Posted: 10 December 2010
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Swanmeade Community which has three pupils living with Duchenne aims high
Karaoke King’s charity night success marks start of fundraising campaign on behalf of Action Duchenne
- Article Posted: 09 December 2010
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Charity fundraiser night at Blyth pub raises £200
Risca firms bare (almost) all for charity calendar
- Article Posted: 09 December 2010
- Permanent Link
Charity calendar raises over £2,000 so far for Action Duchenne
ACTION DUCHENNE APOLOGISES FOR CANCELLATION OF CONFERENCE CALL WITH GENZYME
- Article Posted: 07 December 2010
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CONFERENCE CALL FOR TUESDAY 7TH DECEMBER IS CANCELLED
The Action Duchenne Love Run 2011
- Article Posted: 07 December 2010
- Permanent Link
In London, Cardiff & Manchester
Rare Disease UK report highlights plight of patients
- Article Posted: 06 December 2010
- Permanent Link
Action Duchenne campaigner Carl Tilson features as a case study
Observational Data from One-Year Follow-up Study Validate Six-Minute Walk Distance as an Outcome Measure in Duchenne and Becker Muscular Dystrophy
- Article Posted: 01 December 2010
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PTC Therapuetics confirm the utility fo the 6 minute walk test in Ataluren Trial
Volunteer for Action Duchenne is regional winner of National volunteering award
- Article Posted: 01 December 2010
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Local hero and tireless campaigner Carl ‘Action’ Tilson recognised for extraordinary volunteering efforts in the vinspired National Awards
November 2010
Rotary Club's Support Action Duchenne
- Article Posted: 25 November 2010
- Permanent Link
Rotary Club's give kind donations to help make a difference.
Stand up Comic Francesca Martinez hosts Action Duchenne Oscars
- Article Posted: 11 November 2010
- Permanent Link
Charity Rolls out the Red Carpet for film premier by disadvantaged young filmmakers
Action Duchenne 8th International Conference webinars
- Article Posted: 10 November 2010
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You can view meetings online and send us questions and comments
October 2010
Thamesmead mother is joined by MP in fight for son’s services
- Article Posted: 19 October 2010
- Permanent Link
Action Duchenne Lobby results in improvement in services for Adam aged 7, thanks to intervention of local MP Teresa Pearce
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
- Article Posted: 15 October 2010
- Permanent Link
-- AVI-4658 Data from Phase 1b/2 Study Presented at 15th International Congress of the World Muscle Society Supports Potential as Disease Modifying Therapy –
Action Duchenne National Advocacy Council responds to DOH White Papers
- Article Posted: 07 October 2010
- Permanent Link
Liberating the NHS: Commissioning For Patients and Achieving Equity and Excellence for Children
Action Duchenne National Advocacy Council submission to Commons Select Committee
- Article Posted: 07 October 2010
- Permanent Link
Inquiry into Commissioning
Interest in charity Cook Book “Looks Good, Tastes Great – Jewish Culinary Favourites” booms due to Ed Miliband fever
- Article Posted: 05 October 2010
- Permanent Link
Duchenne Muscular Dystrophy charity celebrity recipe book boosted by Labour Party Leader support with all proceeds to support research
15 year old Duchenne boy gets first new artificial heart
- Article Posted: 04 October 2010
- Permanent Link
Italian clinicians use artifical heart for Duchenne patient
September 2010
USA STS Machine for Duchenne
- Article Posted: 23 September 2010
- Permanent Link
Dr Rhodes STS machine
Announcing the CureDuchenne Research Index
- Article Posted: 06 September 2010
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Cure Duchenne publish the DMD Community's research and clinical trial index
August 2010
Professor Dame Kay Davies on Biomarin Trial
- Article Posted: 04 August 2010
- Permanent Link
Message to Action Duchenne families
Update on Ataluren Data Presented at the International Congress on Neuromuscular Diseases
- Article Posted: 02 August 2010
- Permanent Link
Professor Kate Bushby updates results for Ataluren
Biomarin stops development of utrophin upregulation drug
- Article Posted: 02 August 2010
- Permanent Link
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
July 2010
Andrew Lansley responds to our Lobby white paper
- Article Posted: 27 July 2010
- Permanent Link
Minister of State for Heatlh responds
Parent gains support of Shadow Health Minister Diana Johnson
- Article Posted: 21 July 2010
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Action Duchenne lobby is successful in gaining senior MPs backing
Action Duchenne Charity Maiden Hurdle race held at Newton Abbot
- Article Posted: 18 July 2010
- Permanent Link
15 times champion jockey Tony McCoy takes part in race named after Action Duchenne
Paul Maynard MP asks questions of Health Minister in Parliament
- Article Posted: 13 July 2010
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Following our lobby in June Paul Maynard MP raises questions about Standards of Care for Duchenne
New NHS reforms may deprive more Duchenne families of medical care
- Article Posted: 13 July 2010
- Permanent Link
Andrew Lansley's proposals in White Paper offer nothing for Duchenne patients
Larry Phillips and his Grandad join Action Duchenne Lobby of Parliament
- Article Posted: 13 July 2010
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ITN news report of Action Duchenne Lobby June 16th 2010
Breakthrough results for new medicines for devastating childhood killer disease bring hope to families and mark 10th anniversary of decoding the Human Genome
- Article Posted: 07 July 2010
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Genetic medicines now a reality within foreseeable future for the rare genetic condition Duchenne Muscular Dystrophy thanks to discovery of the Human Genome
New Early Day Motion gathers cross party support
- Article Posted: 06 July 2010
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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
June 2010
Genzyme coninue to work with PTC on Ataluren
- Article Posted: 24 June 2010
- Permanent Link
Annamarie Dillon from Genzyme has sent Action Duchenne this recent update
Bernard, Rachel, Ben and Jacob write to their MP
- Article Posted: 24 June 2010
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Write to your MP today to follow up our brilliant Lobby of Parliament
Dame Professor Kay Davies discusses Duchenne
- Article Posted: 24 June 2010
- Permanent Link
The Age of the Genome
Prosensa and GlaxoSmithKline initiate development of four additional products - exon 45, 52,53, and 55
- Article Posted: 23 June 2010
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Broadened program marks key inflexion in Prosensa’s progress to a fully integrated specialty pharma company
David and Nick are you listening?
- Article Posted: 18 June 2010
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Action Duchenne Lobby of Parliament June 16th
Champion MP sponsors Early Day Motion in Parliament
- Article Posted: 15 June 2010
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Dave Anderson MP sponsors EDM 206
Top clinicians and parents of boys living with Duchenne voice their support for Lobby to Parliament
- Article Posted: 14 June 2010
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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
Action Duchenne lobbies Government for care levels that will extend Duchenne childrens’ lives by up to 15 years, in face of threatened cut backs
- Article Posted: 09 June 2010
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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
Parliament recognises Seeds of Hope
- Article Posted: 09 June 2010
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Even a seed can make it to Parliament
Topline biopsy results from systemic treatment with AVI-4658 show an important step forward in race to find a treatment for Duchenne Muscular Dystrophy
- Article Posted: 03 June 2010
- Permanent Link
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
May 2010
Lobby the new Coalition Government
- Article Posted: 28 May 2010
- Permanent Link
Dont Cut our Care and New Medicines for Duchenne
Action Duchenne selected as Charity for the Year by Northolt Methodist Church
- Article Posted: 28 May 2010
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Church supports local family living with Duchenne Muscular Dystrophy
Follow Up Open Conference Call for Ataluren
- Article Posted: 20 May 2010
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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.
Action Duchenne hosts meeting in collaboration with UK Duchenne organisations and leading experts to raise awareness of care standards for Duchenne Muscular Dystrophy
- Article Posted: 19 May 2010
- Permanent Link
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
Action Duchenne launches nationwide campaign Dinner4Duchenne to get friends Dining for Charity
- Article Posted: 13 May 2010
- Permanent Link
Trend for ‘pop-up’ restaurants fuels initiative from Action Duchenne where friends host paid for dinner parties
Carl ‘Action’ Tilson is presented with Mancunian of the Year award at informal Pride of Manchester Awards ceremony
- Article Posted: 11 May 2010
- Permanent Link
Carl collects his shiny award in front of proud family
Stockton-on-Tees Grandmother joins Action Duchenne’s nationwide campaign Dinner4Duchenne to get friends Dining for Charity
- Article Posted: 06 May 2010
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Trend for ‘pop-up’ restaurants fuels initiative from Action Duchenne where friends host paid for dinner parties
April 2010
Summary of Ataluren results issued
- Article Posted: 20 April 2010
- Permanent Link
Low dose of ataluren appears to show better results in 6 minute walk test
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
- Article Posted: 15 April 2010
- Permanent Link
Manchester born, terminally ill fund raiser and tireless champion for Duchenne Muscular Dystrophy receives accolades
March 2010
Standards of Care - A Family Guide
- Article Posted: 31 March 2010
- Permanent Link
Do you have access to multi disciplinary expert medical care?
Prosensa Initiates Clinical Development of PRO044 in an Open Label Phase I/II Study
- Article Posted: 30 March 2010
- Permanent Link
Prosensa’s second clinical candidate for treatment of Duchenne Muscular Dystrophy
Update for patients and families on ataluren trial results
- Article Posted: 26 March 2010
- Permanent Link
Update from Genzyme
Life Thru A Lens Exhibition Launch
- Article Posted: 25 March 2010
- Permanent Link
BBC Highlight Exhibition Launch
Action Duchenne launches new notifications feature on Website
- Article Posted: 18 March 2010
- Permanent Link
Join the Action Duchenne Community
Action Duchenne is proud and delighted to congratulation Carl 'Action' Tilson on becoming Mancunian of the Year 2010
- Article Posted: 15 March 2010
- Permanent Link
Carl scoops top honours at Pride of Manchester Awards, beating Gary Barlow and Ryan Giggs
A blooming great time to plant a winning sunflower for Action Duchenne ‘Seeds of Hope’ Appeal
- Article Posted: 11 March 2010
- Permanent Link
Action Duchenne launches nationwide appeal to get children to grow sunflowers to raise funds for charity
Looks Good, Tastes Great, gets great reviews
- Article Posted: 11 March 2010
- Permanent Link
Carol Muskoron, Associate editor at www.allaboutyou.com, the online home of Good Housekeeping, House Beautiful, Prima, SHE, Country Living and Coast magazine reviews
PTC answers questions on the cancelled Ataluren Trial
- Article Posted: 05 March 2010
- Permanent Link
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.
PTC Therapuetics have suspended the current Ataluren Trial for Duchenne
- Article Posted: 04 March 2010
- Permanent Link
We have received this press release from PTC therapuetics concerning the Ataluren clinical trials
February 2010
Report of the Parent Project International research Conference in Rome
- Article Posted: 18 February 2010
- Permanent Link
Karl Bettelheim reports on the international research conference in Italy in February
Action Duchenne launches new Cook Book “Looks Good, Tastes Great – Jewish Culinary Favourites”
- Article Posted: 17 February 2010
- Permanent Link
Charity launches second cook book after success of ‘Caledonian Kitchen’ with all proceeds to support research
Edward Ackroyd stars in new film directed by David Jason
- Article Posted: 11 February 2010
- Permanent Link
Young Edward and his Mum Heidy are interviewed by GMTV
Outstanding charity fundraiser Carl Tilson bids for Pride Of Manchester Awards 2009 - 2010
- Article Posted: 09 February 2010
- Permanent Link
Manchester born, fund raiser and tireless champion for Duchenne Muscular Dystrophy in the running for Mancunion of the Year
January 2010
Sunday People highlights Carl's campaign
- Article Posted: 31 January 2010
- Permanent Link
Action Duchenne campaigner Carl Tilson, who is living with Duchenne Muscular Dystrophy, features in an article in the Sunday People supplement, Take it Easy
Exciting new clinical trials to develop treatment for Duchenne Muscular Dystrophy - Press Release
- Article Posted: 26 January 2010
- Permanent Link
Leading pharmaceutical development company for serious diseases and medical conditions undertakes first steps in bringing new treatment for DMD to market
Exciting new clinical trials to develop treatment for Duchenne Muscular Dystrophy
- Article Posted: 25 January 2010
- Permanent Link
Leading pharmaceutical development company for serious diseases and medical conditions undertakes first steps in bringing new treatment for DMD to market
Initial results from systemic treatment with AVI-4658 positive
- Article Posted: 06 January 2010
- Permanent Link
Positive RNA and Protein Signals in first cohorts (groups) analysed
December 2009
Action Duchenne applauds publication of internationally agreed Standards of Care for the treatment of Duchenne Muscular Dystrophy
- Article Posted: 04 December 2009
- Permanent Link
First step is taken towards bringing an end to the current ‘postcode lottery’ of care for those living with Duchenne
TREAT-NMD Advisory Committee for Therapeutics is launched to guide best potential new therapies for the treatment of neuro-muscular diseases to clinical trials
- Article Posted: 03 December 2009
- Permanent Link
Applications invited for comprehensive appraisals of new therapies by 15 December 2009
November 2009
Action Duchenne and Duchenne Ireland funds further research for exon skipping therapies
- Article Posted: 26 November 2009
- Permanent Link
Recent successful trials of RNA-based drug provide foundations for new therapies for more patients with Duchenne Muscular Dystrophy
Swine flu advice from Treat NMD
- Article Posted: 23 November 2009
- Permanent Link
Professor Hanns Lochmüller, Professor Volker Straub, Professor Kate Bushby
Global excitement about potential treatments for Duchenne
- Article Posted: 18 November 2009
- Permanent Link
Dr. Matthew Wood reports on recent developments in exon skipping trials from the Oligonucleotide Therapeutic Society meeting held in Fukuoka, Japan in November.
Halloween Ball raises over £40k for Action Duchenne charity
- Article Posted: 17 November 2009
- Permanent Link
Successful fundraising continues to support funding for research into Duchenne Muscular Dystrophy
Action Duchenne funds appointment of new TREAT-Duchenne Coordinator
- Article Posted: 05 November 2009
- Permanent Link
New role to help promote Internationally agreed Standards of Care for Duchenne Muscular Dystrophy
October 2009
7th Annual Duchenne International Conference, most successful yet
- Article Posted: 29 October 2009
- Permanent Link
Record attendance at Duchenne Conference
AVI BioPharma Presents Updated Safety Data from Ongoing Systemic Trial of AVI-4658 at 7th Annual Action Duchenne International Conference
- Article Posted: 26 October 2009
- Permanent Link
Data shosw PMO well tolerated in penultimate dose cohort (10mg/kg)
AVI BioPharma to Present Safety Update from Ongoing Systemic Trial of AVI-4658 at 7th Annual Action Duchenne International Conference
- Article Posted: 22 October 2009
- Permanent Link
Action Duchenne welcomes presentation of latest trial findings at annual conference
Exon Skipping Drug Prevents Muscle Wasting and Maintains Muscle Function in Severely Affected, Dystrophin Deficient Mice
- Article Posted: 21 October 2009
- Permanent Link
New Publication in Molecular Therapy Outlines Dramatic Effects in Animals Treated with Splice Switching PPMO, Demonstrates Promise for Treatment of Duchenne Muscular Dystrophy
Keith Harris and Orville Support Action Duchenne Fundraising Event
- Article Posted: 19 October 2009
- Permanent Link
Bicester Family organise fantastic charity auction event
Personalised medicine: patient groups call on regulators to set approval route
- Article Posted: 14 October 2009
- Permanent Link
from Science Business by Nuala Moran
Prosensa and GlaxoSmithKline form alliance to fight Duchenne Muscular Dystrophy
- Article Posted: 13 October 2009
- Permanent Link
Leiden and London, October 13 2009
Sam joins MDEX exon skipping trial
- Article Posted: 05 October 2009
- Permanent Link
Danny Smith Sams Dad reports on the latest AVI/MDEX trial
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
- Article Posted: 02 October 2009
- Permanent Link
Action Duchenne sees positive step forward to paving way for individual genomic (designer) drugs to treat Duchenne
September 2009
AVI BioPharma Phase 1 Proof of Concept and Safety Data for AVI-4658 in Duchenne Muscular Dystrophy Featured in Lancet Neurology
- Article Posted: 03 September 2009
- Permanent Link
AVI-4658 Demonstrates Compelling Proof of Concept and Safety Profile for Pediatric Patients with DMD; Findings Support Progression to Current Systemic Use Trial
August 2009
The Paper Mill at Apsley supports Action Duchenne with Carnival and Beer Festival over Bank Holiday Weekend
- Article Posted: 25 August 2009
- Permanent Link
National charity for Duchenne Muscular Dystrophy to benefit from bank holiday family fun
Action Duchenne supports Walton report findings and renews calls for ‘Centres of Excellence’ approach to treatment of muscular dystrophy
- Article Posted: 25 August 2009
- Permanent Link
Walton Report confirms ‘postcode lottery’ to life expectancy for patients living with muscular dystrophy
V Inspire Awards
- Article Posted: 18 August 2009
- Permanent Link
nominate a genius volunteer
Action Duchenne Replies to Health Minister
- Article Posted: 07 August 2009
- Permanent Link
Nick Catlin our CEO replies to Gillian Merron at the Department of Heatlh
July 2009
Patron Helena Bonham Carter supports Action Duchenne in its calls for the Government to follow recommendations of the House of Lords Genomic Medicine Report
- Article Posted: 30 July 2009
- Permanent Link
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
AVI BioPharma and Action Duchenne Team Up to Support Advancement of PMO-based Therapeutics for Treatment of Duchenne Muscular Dystrophy
- Article Posted: 28 July 2009
- Permanent Link
Action Duchenne provides $1.2m to support continuing development of drugs to treat Duchenne Muscular Dystrophy
Action Duchenne supports bid for Pride of Britain Nomination by Carl ‘Action’ Tilson
- Article Posted: 22 July 2009
- Permanent Link
Manchester terminally ill fund raiser bids for nomination to raise awareness of little known disease that is the biggest genetic childhood killer
Genomics Medicine Campaign
- Article Posted: 22 July 2009
- Permanent Link
Action Duchenne launches campaign to ask the Government to publish White paper
Action Duchenne supports findings of Government Report on Genomic Medicine and renews calls for ring fenced funding and more Centres of Excellence
- Article Posted: 17 July 2009
- Permanent Link
Single-gene disorders must not be left behind as new Genomic Medicines start to address more complex diseases
Swine Flu and Duchenne
- Article Posted: 03 July 2009
- Permanent Link
How to deal with Swine Flu outbreak
June 2009
Action Duchenne lobbies Northern Ireland Assembly for Centres of Excellence and ‘Best Practice’ standards of medical care for all living with Duchenne Muscular Dystrophy
- Article Posted: 18 June 2009
- Permanent Link
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
Action Duchenne lobbies Government for ‘Best Practice’ standards of medical care for all and for funding to develop a cure for Duchenne Muscular Dystrophy
- Article Posted: 11 June 2009
- Permanent Link
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
Action Duchenne lobbies Welsh Assembly for Centres of Excellence and ‘Best Practice’ standards of medical care for all living with Duchenne Muscular Dystrophy
- Article Posted: 05 June 2009
- Permanent Link
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
Action Duchenne calls for an end to the scandalous Postcode Lottery of treatment for boys and young men living with Duchenne Muscular Dystrophy
- Article Posted: 03 June 2009
- Permanent Link
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
Action Duchenne lobbies Scottish Parliament for Centres of Excellence and ‘Best Practice’ standards of medical care for all living with Duchenne Muscular Dystrophy
- Article Posted: 01 June 2009
- Permanent Link
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
May 2009
World-renowned cellist Julian Lloyd Webber pledges support for Action Duchenne
- Article Posted: 21 May 2009
- Permanent Link
Famous musician becomes latest patron for Action Duchenne, the Charity that supports families and those living with Duchenne
Action Duchenne combines social networking with e-commerce for innovative new website
- Article Posted: 14 May 2009
- Permanent Link
Action Duchenne builds online interactive community to help and support families living with Duchenne Muscular Dystrophy
Race Against Time Campaign
- Article Posted: 12 May 2009
- Permanent Link
Lets get lobbying
Exon Skipping Review April 2009
- Article Posted: 08 May 2009
- Permanent Link
from Günter Scheuerbrandt
Action Duchenne launches ‘Life Thru a Lens’ photography project to raise awareness of Duchenne Muscular Dystrophy
- Article Posted: 07 May 2009
- Permanent Link
Innovative photography project aims to show what living life with Duchenne is like by those whose lives are affected
March 2009
Action Duchenne launches Celebrity Scottish Recipe Book - The Caledonian Kitchen
- Article Posted: 16 March 2009
- Permanent Link
Scottish recipe book featuring favourite recipes from over forty celebrities and chefs from forty top Scottish restaurants raises funds for Duchenne Muscular Dystrophy charity
February 2009
Action Duchenne announces new patent registry with Duchenne Ireland
- Article Posted: 18 February 2009
- Permanent Link
Action Duchenne announces new patent registry with Duchenne Ireland
St Valentine’s Day 10K Love Runs to be held across the UK for Action Duchenne
- Article Posted: 11 February 2009
- Permanent Link
Muscular Dystrophy Charity holds 7th annual nationwide series of ‘Love Runs’ to raise money for research
January 2009
AVI publishes latest Exon skipping clinical trial results
- Article Posted: 21 January 2009
- Permanent Link
Latest drug trial shows potential RNA therapeutic treatment for Duchenne Muscular Dystrophy, says Action Duchenne
