Welcome to Duchenneber, a twenty-four day campaign throughout December, to raise awareness and funds for Duchenne Muscular Dystrophy. Check back here each day and open up a new door for updates on research, patient stories and news about exciting projects at Duchenne UK, our partner charities, family funds and much more.
Today we are launching Duchenneber: a twenty-four day campaign to raise awareness and funds for research into Duchenne Muscular Dystrophy, in collaboration with our new charity partner, Duchenne Now.
To celebrate us coming together for the common cause of accelerating the search for treatments, we want the world to hear about our incredible sons, daughters, children, teenagers and adults, all bravely fighting Duchenne Muscular Dystrophy. And pay tribute to their incredible families.
Building on the success of Duchenne World Awareness Day, we want to dedicate this month to spreading the word about Duchenne Muscular Dystrophy, the ways in which the research landscape has changed, and what we are doing to help accelerate the search for treatments and a cure.
We are entering exciting clinical times for this disease. Now more than ever, we need to raise the profile and awareness of Duchenne Muscular Dystrophy.
Do please visit this website every day to see what’s new. Please SHARE Duchenneber – we want to get it out there. And if you have ideas of how we can improve Duchenneber for next year then do please let us know.
This month we are going to be sharing updates from the community, updates on research projects, details of what we have been working on over the year, and some new announcements.
Thank you to everyone who has joined us in our fight to End Duchenne. Together we are stronger. Together we will make history.
Click the link below to read our exciting news about gene therapy treatments!Exciting gene therapy news!
Duchenneber is a symbol of our recent collaboration with Duchenne Now. We would like to welcome any new Duchenne UK supporters who have come to us from Duchenne Now.
Duchenne Now was founded in 2012, by parents of children and young adults with Duchenne muscular dystrophy, who between them have more than 20 years of dedicated Duchenne charity experience. Their charity was born out of their desire to ensure transparency, accountability and an ambition that all funded projects have a clear road map to market.
Duchenne Now and Duchenne UK share the same dedication in our joint mission to fund and accelerate the search for treatments and a cure for Duchenne for all.
At Duchenne UK we are delighted that Duchenne Now have joined forces with us. Founders of Duchenne Now, Vici Richardson and Tony Levene, have been running the charity since 2012.
Vici Richardson, founder and trustee of Duchenne Now said:
"Over the last five years I am proud to say with our members support we have contributed over half a million across many projects with more still in the pipeline. On top of that we have ensured a shift in how charities in our community are working. Joining forces with Duchenne UK is the next logical step- to share knowledge, our advocacy experience, our funds and expertise to accelerate the fight for a cure.
"Merging Duchenne Now with Duchenne UK will be a great thing for our community. I value the friendship of the founders as well as the tireless work they do. I'm not giving up, far from it, never in the 14 years [since my sons diagnosis] have i felt so much hope for a treatment for Duchenne. But the time has come to take a step back and support those who will take this on."
Tony Levene, founder and trustee of Duchenne Now said:
"We've been working alongside Alex and Emily from Duchenne UK for many years, and I am blown away by the progress they have made. They have attended hundreds of meetings, and have put many quality projects together that Duchenne Now and others have supported. I feel that is it in the best interests of the community for us to join forces, because together we will be stronger."
We are looking forward to the new year, where we will be having discussions with Duchenne Now about choosing which research projects to fund.
It would be great if you could use this opportunity to sign up to regular giving to Duchenne UK.Sign up to Duchenne Direct
Duchenne UK is hosting two more Patient Information Days. These will take place at UCL Great Ormond Street Institute of Child Health in London and at the Queen Elizabeth University Hospital in Glasgow.
Patient information days are primarily aimed at educating parents and caregivers about:
There will also be the opportunity to receive the latest care updates, and learn more about supporting the learning and education of children and adults living with Duchenne muscular dystrophy.
REGISTER HERE NOW TO ATTEND: https://duchenneuk.eventbrite.com
Registration will open in January for the Glasgow patient information day. Email us at firstname.lastname@example.org if you have any queries.
We couldn't have achieved what we have without the support of our wonderful patrons.
Krishnan Guru-Murthy came up with the idea of a bike ride from London to Paris in 24 hours. We called it the Duchenne Dash.
Last year the Dash raised a staggering £1million. In total, all 5 rides have raised over £2.5million!
Thank you Krish!
Last year, Duchenne UK commissioned Professor Steve Winder at Sheffield University to investigate a nutraceutical soy product, called Haelan 951.
Haelan 951 has been popular with some DMD families as a perceived way of slowing down disease progression. It has a very unpleasant taste and is expensive. It has never been tested in clinical trials, and the only evidence for its effectiveness is anecdotal.
Prof. Steve Winder carried out a study in mice which looked at the various properties in Haelan 951. He then divided them up into different diets, and compared them to each other and to a placebo group.
The results clearly showed that one of the diets had a significant and positive effect on the mice.
Duchenne UK has now asked Professor Winder to validate and extend these findings in a new set of experiments.
We will keep you updated with his progress.Take a look at the results here!!
Today, Emily Crossley, the co-founder of Duchenne UK, is chairing a Duchenne Muscular Dystrophy Awareness Day. This is a conference aimed at investors. Speaking at the conference alongside Emily, will be some of the leading professionals in this field.
Professor Dame Kay Davies FRS, from the University of Oxford, will be providing an overview of Duchenne muscular dystrophy: exploring molecular and cellular pathologies and possible therapeutic strategies. Rosaline Quinlivan MD, from the Dubowitz Neuromuscular Centre at Great Ormond Street Hospital (GOSH), will be covering the clinical presentation of DMD across all age groups. She will also be discussing the merits of different types of intervention at these stages. Professor Thomas Voit, from the UCL Great Ormond Street Institute of Health, will be talking about the current drug candidates in the pipeline. He will be discussing outcomes of trials, strengths and challenges and evolution in relation to a changing regulatory landscape.
Later, there will be company presentations for the emerging pipeline of DMD therapies, and an opportunity for Q&A. There will be presentations from Summit, Santhera and Catabasis.
This unique event is bringing together clinical practitioners, biotech and pharmaceutical industry professionals, patient groups, media and speciality investment professionals to discuss DMD, developments in the space, and share experience and information.
The event is from 10am-1pm and will be live streamed.Watch a live stream of the event here
Duchenne muscular dystrophy (DMD) was first described in 1830. We are now in the Golden age for DMD research.
Look at our timeline of the history of Duchenne muscular dystrophy to see how far we have come!
Take at look at Our Impact on the Duchenne UK website to see what we have achieved with the help of donors, partner charities and researchers.OUR IMPACT
We are a lean, ambitious charity. We work hard and keep our costs low to ensure as much of the money you raise goes towards finding a cure for Duchenne. Head over to OUR MISSION on the Duchenne UK website to hear what your money could do to help.
There are many ways you can help Duchenne UK. Any donation, big or small, goes towards helping find new treatments and a cure for Duchenne.
Help us End Duchenne.
You can do anything to fundraise for Duchenne UK. We have come up with some ideas of things you could do to raise money. But you can use your imagination!
Head over to Duchenne UK's Virgin Money Giving page and click 'Start Fundraising' today.Start fundraising for Duchenne UK
Duchenne UK is proud to be funding Decipha, an educational support programme that is free for families. Decipha was set up by Janet Hoskin and Nick Catlin. The Decipha team work face to face with families and offer a range of assessments and valuable support to help them navigate educational changes. This might involve training at school or some advice or support over the phone, or a full assessment followed up by detailed reports and reccommentdations towards Educational Health and Care Plans. This is a FREE service to DMD families.
Kate Tinkler's son Mitchell has Duchenne muscular dystrophy. She recently received support form Decipha and has written a short blog about her experience. Click the link below to read her blog and some more information about Decipha, from founder Nick Catlin.Click here!
Alex's Wish has been a partner charity with Duchenne UK since 2016. We are so pleased to be working closely with the charity.
Here are a few words from Emma Hallam, Alex's Mum and the founder of Alex's Wish.
"Alex’s Wish is a charity based in the East Midlands who are 100% focussed on bringing new treatments – and ultimately a cure to all boys living with Duchenne. Our supporters have been amazing this year so we have been able to put £135K into promising projects to help all boys – including a Tamoxifen trial, gene therapy, repurposing projects and helping to expand clinical resource in the UK. Having organised a range of community and fundraising events throughout the year we now have over 1,000 supporters giving to our cause, and this is growing year on year.
We are equally excited about the year ahead, 2018 is going to be a year of growth for us and we hope to be able to give a further £150K+ to Duchenne UK. In 2018, we will be launching our Business Club, with an aim of raising a minimum of £25,000 per year – this will help us engage with local businesses across the East Midlands to give regularly ensuring we can continue to raise a stable income for years to come. We are a lean, committed and passionate charity with little overheads and focussed on working solely with Duchenne UK as a Charity Partner. Together we are so much stronger and will a much better chance of making a real difference to boys with Duchenne."
To learn more about what Duchenne UK has done with the support of our partner charities, read our impact below.OUR IMPACT
We would like to say a huge thank you to our family and friends funds for all the fantastic fundraising they have done throughout 2017.
Our Family and Friends Funds provide vital support to Duchenne UK by fundraising for us and helping us to advocate to accelerate research. They share our ambition to fund the most promising research, no matter where it is in the world, and to do so with a vision to help bring that research out of the laboratory and into the clinic where it can help patients.
Click the button below to take a look at some of the fantastic work our family and friends funds have done this year.CLICK HERE