In this section of the Hub you can find organisations providing services to people with neuromuscular conditions (NB: These are NOT run by people with neuromuscular conditions themselves, but still provide valued services).
Muscular Dystrophy UK
MDUK supports individuals and families living with muscle-wasting conditions. They support research to drive the development of effective treatments and cures, ensure access to specialist NHS care and support and provide services and promote opportunities to enable individuals and their families to live as independently as possible. MDUK provides a database of services for people with neuromuscular conditions
Duchenne UK is a charity run by parents of young people with Duchenne muscular dystrophy and works to end Duchenne. Duchenne UK works hard to connect researchers, industry the NHS and patients to improve the drug development process and speed up access to treatments. Duchenne UK also works with the Duchenne community and charities such as Pathfinders Neuromuscular Alliance to improve the life of those living with Duchenne.
TreatSMA is a UK initiative of people living with Spinal Muscular Atrophy (SMA) including parents and carers who have joined hands to improve the diagnostics, standards of care, social support and access and provision to treatments in this severe genetic disorder. TreatSMA operates a 24/7 phone line and holds regular webinars to teach and spread awareness of SMA as well as campaign and advocate.
Duchenne Family Support Group
The Duchenne Family Support Group (DFSG) is a UK national charity, run by families for families affected by Duchenne Muscular Dystrophy (DMD). The DFSG have been bringing people together for mutual support, information sharing and social activities since 1987. All of the board of trustees and the Development Officer have experience of living with a family member with Duchenne.
Changing Places Toilets
Changing Places toilets have more room than a standard accessible toilet, with specialist equipment such as an adult-sized changing bench and a hoist system. The Changing Places Consortium is a group of organisations, established in 2005, that campaigns for Changing Places to be installed in all big public spaces, so that everyone, regardless of their access needs or disability or reliance on the assistance of carers or specialist equipment, can use a toilet facility with dignity and hygienically! Their website also has a ‘find a toilet’ map and the facility to plan a route to make sure there is a toilet you are able to access when travelling.
The Muscle Help Foundation
The Muscle Help Foundation is a small, multi-award winning, family-centred national charity delivering life-changing, transformational experiences and programme interventions in the UK for children and young people (8-28yrs) with Muscular Dystrophy. Their mission is to deliver 657 transformational wish-fulfilment experiences called Muscle Dreams, that’s one life-changing, cherished moment-in-time for every muscle in the human body. Their impact continues to be felt by beneficiaries and their families alike who become a part of the charity’s Muscle Warrior tribe.
Spinal Muscular Atrophy UK
SMA UK provides a wide range of SMA-related information and individualised support for anyone affected by SMA, from assisting with a PIP review to providing information about clinical trials. We work with families, adults and other organisations to advocate on priority issues for the SMA Community. Our virtual networks of online groups and podcasts are run by and for adults and young people as a place to share ideas, ask questions and give a voice to all affected by SMA. We cover a range of subjects and are always keen to hear from people who wish to take part.