Charitable foundation investing in genetic research at St Andrews University has now funded over £750,000 into rare condition
Leigh Bishop and Lloyd Bridges take on RideLondon for their nephew, Little Andrew
Devastating blow as European Medicines Agency rejects Duchenne muscular dystrophy treatment
"Everyone made me feel so welcome": Sam Tisbury on volunteering for MDUK
Changing Places Consortium comment on Cornish boy suing theme park over lack of facilities
More than a quarter of a million severely disabled people UK-wide need access to Changing Places toilets. There are over 1100 Changing Places facilities in the UK.
Current building standards recommend that Changing Places toilets be provided in large buildings, such as large train stations, motorway services and museums. Muscular Dystrophy UK, which co-chairs the Changing Places Consortium, want to see the law strengthened so that it is mandatory for all new buildings – such as theme parks – to feature them.
Target MD - Issue 2 - 2018
Statement: Response to Govia Thameslink Railway's policy telling staff not to help disabled people if it will delay trains
According to a story in today’s Metro, Govia Thameslink Railway (GTR) has told staff not to help disabled people on to trains if it might delay the service. Muscular Dystrophy UK has responded to the report, and is now urging Govia Thameslink Railway to work with our Trailblazers to prioritise accessibility for disabled passengers.
Govia Thameslink Railway denying assistance to disabled people to avoid delays is nothing short of discrimination.
Meet #TeamOrange- Nicky Hill
Nicky Hill was one of 114 incredible #TeamOrange runners who took on the sweltering temperatures to complete the 2018 Virgin Money London Marathon for Muscular Dystrophy UK. She tells us why she was running and raising money to help the fight against muscle-wasting conditions.
“30 years ago I lost my two brothers, Gary and Matthew to Duchenne Muscular Dystrophy. In September 2017, my eldest daughter announced she was 3-months pregnant. Because I am a carrier of the disease I mistakenly believed a test carried out 23 years ago on my baby girls showed they were not carriers. To my horror I found this was not the case. Jubilation quickly turned to dread. Over the next three months tests carried out on my daughter eventually came back negative. I’m now a proud grandmother of a healthy grandson, the first boy in three generations. These experiences galvanised me to run in the 2018 London Marathon and raise money for Muscular Dystrophy UK.” Nicky braved the warmest London Marathon on record to finish in 5 hours and 42 minutes, which was a great achievement!
Along with training for the Marathon. Nicky has been doing a variety of fundraising events to help her raise as much money as possible, including setting up the ‘Billericay Big Prize Raffle Draw’. “As part of my fundraising and with the support of many local businesses I have organised the Billericay Prize Draw. I hope to sell 1000 raffle books and raise £5000.” A book of 5 raffle tickets cost just £5 and they are a wide array of fantastic prizes to be won! The draw for the raffle will take place on Saturday 19 May. To find out more about the raffle or to purchase raffle tickets please head to http://www.naturesflowers.co.uk
Mini-muscles could facilitate drug development
Researchers at University College London (UCL) have developed artificial ‘mini-muscles’ that could speed up testing potential treatments for muscle-wasting conditions.
Dr Francesco Saverio Tedesco and his team took skin cells from people with Duchenne, limb girdle and congenital muscular dystrophies and turned them into induced pluripotent stem cells (iPSCs) in the laboratory. These were then grown into tiny muscles with their own nerves and blood vessels, much like a real muscle.
The mini-muscles showed some distinctive features of muscle-wasting conditions, which supports their use as a model for drug screening. They could also be used for more basic science studies to understand more about muscle-wasting conditions.
Dr Tedesco said in a press release:
Our findings are expected to facilitate development of therapies for incurable forms of muscular dystrophy by providing a novel way to test treatments in a personalised fashion and on multiple cell types at the same time. They could also help in developing artificial muscles for tissue replacement.
The study was published in the scientific journal, Cell Reports.
MDUK’s Duchenne Research Breakthrough Fund is supporting Dr Tedesco to build on this exciting work. He is currently developing a reporting system for the mini-muscles, which will allow us to measure the response to treatment.
Further information
Read about Dr Tedesco's MDUK-funded mini-muscle project
Email our Research team at research@musculardystrophyuk.org
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