We will continue to provide information, advice and advocacy support through our national helpline. In 2019/20 we responded to 3,225 requests for support and helped 985 people living with muscle-wasting conditions secure £1.5m of financial support they were entitled to.

This support will be more important than ever in the months ahead. We have seen the number of people coming to us for help go up by one third in the past two months. To meet this increasing demand with a smaller team we will accelerate projects that are exploring how we can fully engage our amazing volunteers in our service provision.

We currently have information and advocacy officers in neuromuscular clinics in Northern Ireland, Scotland, Wales and some parts of England. This will continue in the devolved nations but unfortunately we can no longer support the roles in England. We know these links help people access the essential support we offer. We will continue to work with NHS services to ensure they can easily refer people to us.

Through our events, we provide information, advice and support for people with muscle-wasting conditions. These events give people the opportunity to share their experiences with each other and build friendships: a key part of what we do. As a result of the Coronavirus pandemic we are not able to hold events or continue our programme of Muscle Group meetings, and we don’t know how long that will go on for. But we are exploring virtual alternatives and hope to update you soon.

The online services and events we have delivered during the pandemic will continue to be there to support you.

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