Login to the AD Community

Forgot your password?

Close






In this section

 

August 2010

Professor Dame Kay Davies on Biomarin Trial

Message to Action Duchenne families

View the full news article

Update on Ataluren Data Presented at the International Congress on Neuromuscular Diseases

Professor Kate Bushby updates results for Ataluren

View the full news article

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

View the full news article

July 2010

Andrew Lansley responds to our Lobby white paper

Minister of State for Heatlh responds

View the full news article

Parent gains support of Shadow Health Minister Diana Johnson

Action Duchenne lobby is successful in gaining senior MPs backing

View the full news article

Action Duchenne Charity Maiden Hurdle race held at Newton Abbot

15 times champion jockey Tony McCoy takes part in race named after Action Duchenne

View the full news article

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

View the full news article

New NHS reforms may deprive more Duchenne families of medical care

Andrew Lansley's proposals in White Paper offer nothing for Duchenne patients

View the full news article

Larry Phillips and his Grandad join Action Duchenne Lobby of Parliament

ITN news report of Action Duchenne Lobby June 16th 2010

View the full news article

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

View the full news article

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

View the full news article

June 2010

Genzyme coninue to work with PTC on Ataluren

Annamarie Dillon from Genzyme has sent Action Duchenne this recent update

View the full news article

Bernard, Rachel, Ben and Jacob write to their MP

Write to your MP today to follow up our brilliant Lobby of Parliament

View the full news article

Dame Professor Kay Davies discusses Duchenne

The Age of the Genome

View the full news article

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

View the full news article

David and Nick are you listening?

Action Duchenne Lobby of Parliament June 16th

View the full news article

Champion MP sponsors Early Day Motion in Parliament

Dave Anderson MP sponsors EDM 206

View the full news article

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

View the full news article

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

View the full news article

Parliament recognises Seeds of Hope

Even a seed can make it to Parliament

View the full news article

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

View the full news article

May 2010

Lobby the new Coalition Government

Dont Cut our Care and New Medicines for Duchenne

View the full news article

Action Duchenne selected as Charity for the Year by Northolt Methodist Church

Church supports local family living with Duchenne Muscular Dystrophy

View the full news article

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.

View the full news article

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

View the full news article

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

View the full news article

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

View the full news article

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

View the full news article

April 2010

Summary of Ataluren results issued

Low dose of ataluren appears to show better results in 6 minute walk test

View the full news article

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

View the full news article

March 2010

Standards of Care - A Family Guide

Do you have access to multi disciplinary expert medical care?

View the full news article

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

View the full news article

Update for patients and families on ataluren trial results

Update from Genzyme

View the full news article

Life Thru A Lens Exhibition Launch

BBC Highlight Exhibition Launch

View the full news article

Action Duchenne launches new notifications feature on Website

Join the Action Duchenne Community

View the full news article

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

View the full news article

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

View the full news article

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

View the full news article

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.

View the full news article

PTC Therapuetics have suspended the current Ataluren Trial for Duchenne

We have received this press release from PTC therapuetics concerning the Ataluren clinical trials

View the full news article

February 2010

Report of the Parent Project International research Conference in Rome

Karl Bettelheim reports on the international research conference in Italy in February

View the full news article

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

View the full news article

Edward Ackroyd stars in new film directed by David Jason

Young Edward and his Mum Heidy are interviewed by GMTV

View the full news article

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

View the full news article

January 2010

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

View the full news article

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

View the full news article

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

View the full news article

Initial results from systemic treatment with AVI-4658 positive

Positive RNA and Protein Signals in first cohorts (groups) analysed

View the full news article

December 2009

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

View the full news article

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

View the full news article

November 2009

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

View the full news article

Swine flu advice from Treat NMD

Professor Hanns Lochmüller, Professor Volker Straub, Professor Kate Bushby

View the full news article

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.

View the full news article

Halloween Ball raises over £40k for Action Duchenne charity

Successful fundraising continues to support funding for research into Duchenne Muscular Dystrophy

View the full news article

Action Duchenne funds appointment of new TREAT-Duchenne Coordinator

New role to help promote Internationally agreed Standards of Care for Duchenne Muscular Dystrophy

View the full news article

October 2009

7th Annual Duchenne International Conference, most successful yet

Record attendance at Duchenne Conference

View the full news article

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)

View the full news article

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

View the full news article

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

View the full news article

Keith Harris and Orville Support Action Duchenne Fundraising Event

Bicester Family organise fantastic charity auction event

View the full news article

Personalised medicine: patient groups call on regulators to set approval route

from Science Business by Nuala Moran

View the full news article

Prosensa and GlaxoSmithKline form alliance to fight Duchenne Muscular Dystrophy

Leiden and London, October 13 2009

View the full news article

Sam joins MDEX exon skipping trial

Danny Smith Sams Dad reports on the latest AVI/MDEX trial

View the full news article

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

View the full news article

September 2009

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

View the full news article

August 2009

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

View the full news article

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

View the full news article

V Inspire Awards

nominate a genius volunteer

View the full news article

Action Duchenne Replies to Health Minister

Nick Catlin our CEO replies to Gillian Merron at the Department of Heatlh

View the full news article

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

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

View the full news article

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

View the full news article

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

View the full news article

Genomics Medicine Campaign

Action Duchenne launches campaign to ask the Government to publish White paper

View the full news article

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

View the full news article

Swine Flu and Duchenne

How to deal with Swine Flu outbreak

View the full news article

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

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

View the full news article

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

View the full news article

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

View the full news article

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

View the full news article

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

View the full news article

May 2009

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

View the full news article

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

View the full news article

Race Against Time Campaign

Lets get lobbying

View the full news article

Exon Skipping Review April 2009

from Günter Scheuerbrandt

View the full news article

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

View the full news article

March 2009

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

View the full news article

February 2009

Action Duchenne announces new patent registry with Duchenne Ireland

Action Duchenne announces new patent registry with Duchenne Ireland

View the full news article

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

View the full news article

January 2009

AVI publishes latest Exon skipping clinical trial results

Latest drug trial shows potential RNA therapeutic treatment for Duchenne Muscular Dystrophy, says Action Duchenne

View the full news article