On Saturday, over 200 people affected by muscle-wasting conditions joined us for Muscular Dystrophy UK’s National Conference in Birmingham. There they had the opportunity to hear the latest updates on research and clinical developments. The theme for the event was ‘Living Life to the Fullest’, and our speakers covered topics from psychological support and respiratory care to accessible holidays.
You can view three of the workshops from the day below:
- Professor Jenny Morgan – Challenges of stem cell therapy
- Professor Nick Wells – Therapeutic approaches for muscle wasting conditions
- Professor Darren Monckton – Drug development and clinical trials
The conference was also a chance for us to celebrate the outstanding achievements of our supporters. Our annual President’s Awards were presented by Michael and Karen Attenborough, who kindly stepped in for our President, Sue Barker, following a family emergency.
Amrit, from Harrow, raised an amazing £15,000 at this year’s London Marathon. Her inspiration was her six-year-old cousin Shiv who has Duchenne muscular dystrophy. Amrit and her family got the backing of local community, businesses, MPs and celebrities on social media, and raised awareness at work. She battled injuries to make it to the finishing line – but says seeing Shiv cheer her on kept her going and made it all worthwhile.
The Barnley family, from Hampshire, have raised an incredible £250,000 through their family fund, Help4Harry, since nine-year-old Harry was diagnosed with Duchenne muscular dystrophy in 2013. They have inspired others to raise funds, including total strangers. Three men who they had never took on an Ironman challenge in support of Harry, raising over £15,000.
Emma, from Cambridge, is a passionate advocate for the rights of disabled people. She is a talented writer and uses this skill to highlight a wide range of issues affecting young disabled people. She is a regular blogger for the Huffington Post and for Muscular Dystrophy UK, and contributes to our online news stories. During the election, Emma used her talents to draw attention to how manifesto proposals would affect disabled people.
The Bosanquets, from Nottinghamshire, have been working for 14 years to highlight issues that people with Duchenne muscular dystrophy face. Although they say they are not naturally ‘the sort of people to speak up’, they are mindful of how drawing attention to issues surrounding clinical trials and funding of future treatments could benefit the whole Duchenne community. They have publicly drawn on their own experiences to raise awareness of the issues facing families living with the condition.
Matalan have offered unwavering support to Muscular Dystrophy UK since 2012. Having already raised £270,000 for the charity, this year they doubled the number of stores taking part in our fundraising partnership, to 56.
What makes their approach special is that it involves everyone, and they engage management, store staff – the whole team – with our cause.
Vicki, from Bracknell in Berkshire, joined Trailblazers in 2014 and since then her voice has been at the centre of Trailblazers’ work on supporting disabled sports enthusiasts to fully enjoy spectator sports. An avid West Ham fan, Vicki – who has congenital muscular dystrophy – gave a powerful speech in Parliament, to an audience including the Director of the Premier League and met with Sports Minister Tracey Crouch to discuss obstacles that young disabled people meet when trying to access their favourite sports as fans.
Cara (11) and Ciaran (9) from Clonoe in Northern Ireland read about the fundraising efforts of the O’Hanlon family. The O’Hanlons had challenged people to fundraise to help fight Duchenne muscular dystrophy, with their ‘£2 Challenge’. The family would give people £2 to turn into £100 in six weeks. Cara and Ciaran designed, made and sold personalised bookmarks with inspirational quotes, getting neighbours and local shops to do the same. Cara gave presentations at schools to explain why she was raising funds. These budding entrepreneurs have plans to expand their bookmark fundraising even further!
Myotonic dystrophy varies greatly in nature and severity between people. Today, we have little understanding of the reasons for this, and it is difficult not only to help people with the condition understand how it will affect them but also to develop effective treatments.
Professor Darren Monckton is actively involved in international collaborations to improve care and quality of life of people with myotonic dystrophy, and his research group at the University of Glasgow continues to advance our understanding of how a person’s genetic mutation influences their symptoms. This research will allow clinicians to provide more accurate information to patients and help them to plan for the future. Professor Monckton also gives up his time to attend Muscular Dystrophy UK events, meet individuals and families affected by myotonic dystrophy and offer them invaluable information to help them better understand the condition.
The theme for our 2017 Christmas card competition, was “what Christmas means to me”. Our winning designer Archi Kaye, 10, took inspiration from his younger brother Bertie, who has Ullrich muscular dystrophy, for his design “Santa’s little helpers”. He told us: “We watch the film Polar Express every Christmas Eve and have a little party. I love the present factory. I think some elves might have wheelchairs like Bertie. He would love to be an elf in Santa’s workshop, but I think he might open all the presents!”
You can pick up your pack of cards with Archie’s design in our online store.
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