Charity claims proposals will seriously affect current standards of care for people with life threatening neuromuscular conditions
Shape Arts has tickets and drivers to make sure you have a good day out
Parents receive overwhelming support!
The Nottingham based company will support AD throughout 2012
Book now for our one day free conference
North East grandparents gain more support than expected.
North East families determined to make a difference.
Virgin Media branch in Scotland supports Action Duchenne
A variety of events raise a great total!
Scottish families and supporters help raise £3,000 over New Year!
Seasoned campaigner for Action Duchenne gains yet another accolade
Helena Bonham Carter receives award in New Years Honours
Dundee FC helps raise awareness and support Action Duchenne.
Thank you for taking part
Christmas text campaign
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
Prosensa confirms patents for exon skipping
ACP and J E Network both helping to support Action Duchenne
Upwood Village Summer Ball Raise £500 for Action Duchenne
Esther, Colin Mayes and their team Raise £2180.74 from 11collection days this year
Skipping of Exon 52 in Duchenne Muscular Dystrophy Patients
Open-label trial confirmed for those who participated in Phase 2b trial
Bank of England staff raise £36,645.11 for Action Duchenne
Study DMD114876: A Clinical Study to Assess Two Doses of GSK2402986 in Subjects With Duchenne Muscular Dystrophy (DMD)
Bumper ideas spark off charity events in the lead up to Bonfire Night
Chloe McClean stages sponsored hair cut that brings in £1,200 for charity
Father raises over £3,000 from Dublin Marathon to help boys with Duchenne
Mother wins National Lottery Award for ground breaking project to help her son and many others like him to learn to read
More coverage for Include Duchenne for National Lottery Award Win
Include Duchenne project wins best Education Project at The National Lottery Awards 2011
Announced by the Welsh Government today
Families devastated as life-changing test for babies is withdrawn
Action Duchenne supports long term heart medication trial funded by the British Heart Foundation
Tyran Hawthorn’s exhibition opening a great success
Register today to take part online
Mayor heckled on the coalition's cuts to public services, and ongoing welfare reforms
Mark Silverman gives views on care for Duchenne on ‘Are GPs too Powerful’ phone in debate
Accreditation is key to broadening the reach of critical services as they become available on the NHS
Talented artist and photographer chooses his life limiting condition as theme for first collection
Updates to Agenda and we now have FAQ's from our Researchers speaking at the Event
The Telegraph reports on trials for a cure for Duchenne Muscular Dystrophy
John Kraus and Padraig Wright, GlaxoSmithKline
Comedienne Francesca Martinez will perform at Gala Dinner
Health and Social Care Bill passes the Lords
Today members of the House of Lords are debating the future of the NHS
Sign e-petition for Duchenne research
Luc and Monique Pettavino hold watch sale in Monaco
Action Duchenne's Decipha programme highlighted during preview of lottery award finalists
Lisa Auchinvole has to cut short channel swim but reaches goal to raise funds for Action Duchenne
Supporters of iconic football team select Duchenne charity
First ever Wales Ironman completed during last throes of Hurricane Katia
Prosensa to receive up to £27M in development and milestone payments from GSK
Collect4Duchenne Day nets nearly £1000
Local family raises the roof for Action Duchenne
Statement from PTC
Download the Conference Agenda
Charity’s ‘Include Duchenne’ nominated for ‘Best Education project’
Climb of a lifetime is pinnacle of fantastic fundraising efforts for two Lancashire ladies
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.
Second and final round of voting to decide the winner in the National Lottery Awards starts now
Concert held by Scottish Official Board of Highland Dancing donates proceeds to Action Duchenne and MS Scotland
Grandparent Joy Maxwell and friends raise over £300 in Tynemouth and Morrisons in Alnwick in just three hours
Lisa Auchinvole, 40, aims to raise £10,000 to support Action Duchenne charity for muscle wasting disease after friend’s son diagnosed
The family who inspired sponsored bag-packs around Scotland continues pledge to support Action Duchenne
Action Duchenne signs up corporate sponsor for National campaign
Book Sale hits the mark!
Media giants Virgin Media continue to help
Cancelled sky dive due to take place this Sunday, please pledge support
Stuart Wickison lived with Duchenne muscular dystrophy and sadly took his own life on Tuesday 2nd August .
New website will bring treatment information closer to home for families and young people living with Duchenne Muscular Dystrophy
Family & Friends burn rubber in aid of Duchenne Muscular Dystrophy
Family & Friends team up with the Fire Brigade in aid of Action Duchenne
Over 700 Chinese Lanterns release in aid of Action Duchenne
Local supporters group calls for new members
Action Duchenne families and Chair speak out about the need for further work to build on success.
Delays to development of breakthrough treatments brings bitter disappointment to Duchenne families
Charity’s pioneering ‘Takin’ Charge’ project helps young men with rare genetic disease prepare for adulthood
Golf day with a difference
Stirling efforts of nursery raise more money for Action Duchenne after successful Seeds of Hope campaign
Duchenne Charity PPMD holds international conference in Baltimore US
Get tickets now for two hilarious comedy shows before they hit the Edinburgh fringe and support Action Duchenne - 14 July
Fundraising duo have raised over £11k already this year!
National paper runs two page spread about living with Duchenne
Sign up today
SEN and Disability Green Paper
Congratulations Paul!
Action Duchenne at the Scottish Parliament
Families and supporters unite in their call for further funding to provide best practice standards of care and research to find a cure
A whopping £1100 raised at Morrisons in Byker in the North East.
But we still need your support again in September - watch this space for details
A positive day with many families meeting their newly appointed AMS for the first time
Professional body promotes Action Duchenne to its membership to raise awareness
How do you decide to take part – a new study at Newcastle University
Families and supporters unite in their call for further funding to provide best practice standards of care and research to find a cure
Gene Sequencing
AVI BioPharma Provides Update on Initiation of Eteplirsen Phase 2 Clinical Trial
Over 20 boys & young men living with Duchenne match on Downing Street
Families and supporters unite in their call for further funding to provide best practice standards of care and research to find a cure
One of the world’s top 10 city marathon venues becomes hot magnet for fund-raising activities
Determination to succeed makes National headlines
Paul Chandler achieves perfect physical fitness to fight for a cure
Vote now to ensure Decipha wins and appears on National TV
Members and supporters of the charity urged to join more than 400,000 people who have already signed the high profile petition
Prosensa’s Clinical Development Plan Update – May 2011
GSK’s Clinical Development Plan for DMD – May 2011
Families have until 31 May to make their views known
Stuart Giles is recruiting for this year's Pedal for Scotland
James Stockton gets his photo in the Daily Mirror
UK DPC organises day of protest
Kent school children raise £3325 with sponsored events
Children join the Great North Run for Action Duchenne
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
Utrophin upregulator could be another step closer to providing a viable treatment for Duchenne patients says Action Duchenne
Follow-on open label clinical study announced for previous trial participants
Clinical trial suspended; intention is to start a new study after discussions with regulatory agencies
Action Duchenne is now £250 better off thanks to the ingenuity of Chapel Road Primary School.
5th Darlington Cub Scout Group took part in a collective marathon to raise awareness and funds for Action Duchenne
Forty-Eight Week Follow-Up Data from a Phase I/IIa Extension Study of PRO051/GSK2402968 in Subjects with Duchenne Muscular Dystrophy
AVI announce Phase 2 trial in June
AVI presents data at Conference in the US
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
Funding for pioneering research into gene therapy by Action Duchenne has led to further funds for research into this life limiting disease
Charity states that government plans that threaten the most vulnerable must now be re-examined, young men to lobby parliament for access to treatment
Awards to fund respiratory studies for Carmeseal™ in Duchenne muscular dystrophy and mechanism of action studies in heart failure
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 Ataluren Programme March 2011 update issued
Gavin Richardson raises over £300 in the Alloa half marathon
by offering sponsored packing service at Morrisons!
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
Charity increases pressure on UK government to support treatment research and care for those living with Duchenne Muscular Dystrophy
Great support for Rare Disease UK
Olympic hopeful raises awareness of charity work by championing cause
Come and boogie on down for a great cause!
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
Local fan living with Duchenne gets the chance to support his team
Online resources made available to patients, families and clinicians across Europe on standards of care for DMD
Developer dad donates proceeds of sales from new Xbox 360 game to charity
Churchgoers’ successful fundraising activities benefit chosen charity of the year
Action Duchenne Love Runs a big hit with runners
Join the focus group to give your opinions on Quality of Care
Richard Goodman, a top 3 ranked 3,000m and 5,000m runner in his age group, becomes an ambassador for Action Duchenne
Act Now! Deadline extended to 18th February!
Action Duchenne Trustee Dr Karl Bettelheim updates on the very latest Duchenne Research
Whickham Villa Tues 15 Feb and Newcastle Thurs 17 Feb
July car rally sets fundraising target of £6000
Equalities chief Trevor Phillips told the BBC that Speaker John Bercow should look into the matter
Join the National Lobbies - download our lealfet
And some last minute hints and tips for performing at your best on the big day
Sophie Medd writes about Duchenne – The Forgotten Generation for professional trade magazine
Pilot Trials Now, part of CharleysFund forges ahead with ground breaking trial
Pupils and staff at primary school raise over £1000 with Christmas CD, wishing well and Boxing Day sea plunge
28 February is Rare Disease Day – support required for Lobby Days
Newcastle venue first to screen Duchenne – The Forgotten Generation in 201
Oxfordshire family highlight concerns over government funding cuts
Act now if you would like to join a dynamic team and really make a difference
But its not too late to join in the fun and raise money for a great cause
Scottish couple raise awareness and much needed funds thanks to Virgin Media staff
Services for our children are already poor, the fast rate of change proposed will leave the vulnerable even further behind
Carl Tilson is a National Finalist for THE SHOUT AWARD from vinspired.
Residential Education Transport cuts will hit those living with Duchenne
Beautifully written and produced charity recipe book flies flag for Scotland and Action Duchenne
Genzyme issues Programme Update to DBMD community
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
Update from CARE-NMD
Duchenne boy stars in film which takes top honours at Monaco Film Festival
Retired microbiologist/biochemist with a grandson with Duchenne explains research in easy to understand language
Residential Education Transport cuts could hit those living with Duchenne
Check your numbers on Friday
MDEX consortium extends membership to include experts from other countries
First wave sites in France, Germany and Republic of Korea
Swanmeade Community which has three pupils living with Duchenne aims high
Charity fundraiser night at Blyth pub raises £200
Charity calendar raises over £2,000 so far for Action Duchenne
CONFERENCE CALL FOR TUESDAY 7TH DECEMBER IS CANCELLED
In London, Cardiff & Manchester
Action Duchenne campaigner Carl Tilson features as a case study
PTC Therapuetics confirm the utility fo the 6 minute walk test in Ataluren Trial
Local hero and tireless campaigner Carl ‘Action’ Tilson recognised for extraordinary volunteering efforts in the vinspired National Awards
Rotary Club's give kind donations to help make a difference.
Charity Rolls out the Red Carpet for film premier by disadvantaged young filmmakers
You can view meetings online and send us questions and comments
Action Duchenne Lobby results in improvement in services for Adam aged 7, thanks to intervention of local MP Teresa Pearce
-- AVI-4658 Data from Phase 1b/2 Study Presented at 15th International Congress of the World Muscle Society Supports Potential as Disease Modifying Therapy –
Liberating the NHS: Commissioning For Patients and Achieving Equity and Excellence for Children
Inquiry into Commissioning
Duchenne Muscular Dystrophy charity celebrity recipe book boosted by Labour Party Leader support with all proceeds to support research
Italian clinicians use artifical heart for Duchenne patient
Dr Rhodes STS machine
Cure Duchenne publish the DMD Community's research and clinical trial index
Message to Action Duchenne families
Professor Kate Bushby updates results for Ataluren
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
Minister of State for Heatlh responds
Action Duchenne lobby is successful in gaining senior MPs backing
15 times champion jockey Tony McCoy takes part in race named after Action Duchenne
Following our lobby in June Paul Maynard MP raises questions about Standards of Care for Duchenne
Andrew Lansley's proposals in White Paper offer nothing for Duchenne patients
ITN news report of Action Duchenne Lobby June 16th 2010
Genetic medicines now a reality within foreseeable future for the rare genetic condition Duchenne Muscular Dystrophy thanks to discovery of the Human Genome
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
Annamarie Dillon from Genzyme has sent Action Duchenne this recent update
Write to your MP today to follow up our brilliant Lobby of Parliament
The Age of the Genome
Broadened program marks key inflexion in Prosensa’s progress to a fully integrated specialty pharma company
Action Duchenne Lobby of Parliament June 16th
Dave Anderson MP sponsors EDM 206
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
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
Even a seed can make it to Parliament
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
Dont Cut our Care and New Medicines for Duchenne
Church supports local family living with Duchenne Muscular Dystrophy
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.
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
Trend for ‘pop-up’ restaurants fuels initiative from Action Duchenne where friends host paid for dinner parties
Carl collects his shiny award in front of proud family
Trend for ‘pop-up’ restaurants fuels initiative from Action Duchenne where friends host paid for dinner parties
Low dose of ataluren appears to show better results in 6 minute walk test
Manchester born, terminally ill fund raiser and tireless champion for Duchenne Muscular Dystrophy receives accolades
Do you have access to multi disciplinary expert medical care?
Prosensa’s second clinical candidate for treatment of Duchenne Muscular Dystrophy
Update from Genzyme
BBC Highlight Exhibition Launch
Join the Action Duchenne Community
Carl scoops top honours at Pride of Manchester Awards, beating Gary Barlow and Ryan Giggs
Action Duchenne launches nationwide appeal to get children to grow sunflowers to raise funds for charity
Carol Muskoron, Associate editor at www.allaboutyou.com, the online home of Good Housekeeping, House Beautiful, Prima, SHE, Country Living and Coast magazine reviews
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.
We have received this press release from PTC therapuetics concerning the Ataluren clinical trials
Karl Bettelheim reports on the international research conference in Italy in February
Charity launches second cook book after success of ‘Caledonian Kitchen’ with all proceeds to support research
Young Edward and his Mum Heidy are interviewed by GMTV
Manchester born, fund raiser and tireless champion for Duchenne Muscular Dystrophy in the running for Mancunion of the Year
Action Duchenne campaigner Carl Tilson, who is living with Duchenne Muscular Dystrophy, features in an article in the Sunday People supplement, Take it Easy
Leading pharmaceutical development company for serious diseases and medical conditions undertakes first steps in bringing new treatment for DMD to market
Leading pharmaceutical development company for serious diseases and medical conditions undertakes first steps in bringing new treatment for DMD to market
Positive RNA and Protein Signals in first cohorts (groups) analysed
First step is taken towards bringing an end to the current ‘postcode lottery’ of care for those living with Duchenne
Applications invited for comprehensive appraisals of new therapies by 15 December 2009
Recent successful trials of RNA-based drug provide foundations for new therapies for more patients with Duchenne Muscular Dystrophy
Professor Hanns Lochmüller, Professor Volker Straub, Professor Kate Bushby
Dr. Matthew Wood reports on recent developments in exon skipping trials from the Oligonucleotide Therapeutic Society meeting held in Fukuoka, Japan in November.
Successful fundraising continues to support funding for research into Duchenne Muscular Dystrophy
New role to help promote Internationally agreed Standards of Care for Duchenne Muscular Dystrophy
Record attendance at Duchenne Conference
Data shosw PMO well tolerated in penultimate dose cohort (10mg/kg)
Action Duchenne welcomes presentation of latest trial findings at annual conference
New Publication in Molecular Therapy Outlines Dramatic Effects in Animals Treated with Splice Switching PPMO, Demonstrates Promise for Treatment of Duchenne Muscular Dystrophy
Bicester Family organise fantastic charity auction event
from Science Business by Nuala Moran
Leiden and London, October 13 2009
Danny Smith Sams Dad reports on the latest AVI/MDEX trial
Action Duchenne sees positive step forward to paving way for individual genomic (designer) drugs to treat Duchenne
AVI-4658 Demonstrates Compelling Proof of Concept and Safety Profile for Pediatric Patients with DMD; Findings Support Progression to Current Systemic Use Trial
National charity for Duchenne Muscular Dystrophy to benefit from bank holiday family fun
Walton Report confirms ‘postcode lottery’ to life expectancy for patients living with muscular dystrophy
nominate a genius volunteer
Nick Catlin our CEO replies to Gillian Merron at the Department of Heatlh
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
Action Duchenne provides $1.2m to support continuing development of drugs to treat Duchenne Muscular Dystrophy
Manchester terminally ill fund raiser bids for nomination to raise awareness of little known disease that is the biggest genetic childhood killer
Action Duchenne launches campaign to ask the Government to publish White paper
Single-gene disorders must not be left behind as new Genomic Medicines start to address more complex diseases
How to deal with Swine Flu outbreak
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
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
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
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
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
Famous musician becomes latest patron for Action Duchenne, the Charity that supports families and those living with Duchenne
Action Duchenne builds online interactive community to help and support families living with Duchenne Muscular Dystrophy
Lets get lobbying
from Günter Scheuerbrandt
Innovative photography project aims to show what living life with Duchenne is like by those whose lives are affected
Scottish recipe book featuring favourite recipes from over forty celebrities and chefs from forty top Scottish restaurants raises funds for Duchenne Muscular Dystrophy charity
Action Duchenne announces new patent registry with Duchenne Ireland
Muscular Dystrophy Charity holds 7th annual nationwide series of ‘Love Runs’ to raise money for research
Latest drug trial shows potential RNA therapeutic treatment for Duchenne Muscular Dystrophy, says Action Duchenne