Meet people living with muscular dystrophy
Many people tell us that they feel really inspired after making contact with someone else who has been in the same situation as they have, and having an opportunity to talk about their experiences. As well putting people in touch through our MD Links service there are lots of ways to meet families and individuals in your area who are affected by muscle-wasting conditions.
Get in the know
At our local support groups, which we call Muscle Groups, we get individuals and families together with clinicians and special guest speakers to discuss specific areas of living with muscular dystrophy or a related neuromuscular condition, such as education, health issues and regional campaigning. Our local workshops are also useful for meeting up with other like-minded people wanting to know the same things you do.
Joanne Ashton, whose son has Duchenne muscular dystrophy and is a member of the North West Muscle Group, commented:
"I'm glad I joined the Muscle Group. It means I've got all this information early on and I won't come up against a brick wall later - I feel I've been pre-armed. It's nice to know I'm not on my own and it's good to meet other people at different stages. Every day I imagine how bad things could get, but at the Muscle Group I met young lads with Duchenne muscular dystrophy who are in wheelchairs and they're fantastic, they're doing so well. Everything had a real positive spin on it too, and I realised it's not all doom and gloom."
Muscle Groups bring together patients and their families to campaign for better health services in their area. Among the groups' campaigning successes are getting NHS funding for 31 neuromuscular care advisors across the UK, who are specialists providing vital support, advice and information for families affected by muscular dystrophy and related neuromuscular conditions.
If you would like to meet with your own local Muscle Group, please email info@muscular-dystrophy.org or call 020 7803 4846.
Get together with families fundraising for research
Fundraising is a great way to meet new people in your area, who are affected by a neuromuscular condition, and to raise much-needed funds for research. Families from across the country have joined local fundraising groups, which are supported by the charity.
We rely upon the work of local fundraising groups to continue funding research and providing care and support to families affected by muscular dystrophy and related neuromuscular conditions.
If you would like to speak to your local Volunteer Fundraising Manager, please do get in touch with us on 020 7803 4829 or events@muscular-dystrophy.org or complete our online form and tell us about your fundraising ideas.
Meet up with young people making a difference
Trailblazers, the charity's network of young campaigners, tackle the social issues affecting young disabled people, such as access to higher education, employment and social and leisure opportunities.
Join up with them and campaign on issues close to your heart, develop new skills, participate in work experience and make new friends. If this sounds like something you'd be interested in, call us on 020 7803 4807 and get involved!
I joined Trailblazers because I wanted to meet new people (especially people my age and with a similar condition) and to be at the forefront of protecting the rights of young people with muscle-wasting disease." Sulaiman Khan, 27
Meet other parents
It often helps just to talk to people who understand what you're going through. The Parents Education Network (PEN), part of our online forum TalkMD, puts parents in touch with other parents so they can talk about the issues they are facing in trying to ensure their child gets the best possible education, particularly around special educational needs.
A group just for parents of a child with muscular dystrophy is brilliant! I wish someone could have told me about this sooner! It is great to be able to talk to people who are going through this as well." BJs Mum, on PEN
