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August 2010
Professor Dame Kay Davies on Biomarin Trial
- Article Posted: 04 August 2010
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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Update from Genzyme
Life Thru A Lens Exhibition Launch
- Article Posted: 25 March 2010
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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Professor Hanns Lochmüller, Professor Volker Straub, Professor Kate Bushby
Global excitement about potential treatments for Duchenne
- Article Posted: 18 November 2009
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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
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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
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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
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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
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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
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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
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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
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Leiden and London, October 13 2009
Sam joins MDEX exon skipping trial
- Article Posted: 05 October 2009
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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
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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
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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
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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
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Walton Report confirms ‘postcode lottery’ to life expectancy for patients living with muscular dystrophy
V Inspire Awards
- Article Posted: 18 August 2009
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nominate a genius volunteer
Action Duchenne Replies to Health Minister
- Article Posted: 07 August 2009
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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Latest drug trial shows potential RNA therapeutic treatment for Duchenne Muscular Dystrophy, says Action Duchenne
