Support for parents and carers

Our group brings together parents of children living with muscle wasting and weakening conditions. Our group is a supportive, safe environment. You can share your story, ask questions, get advice and talk about the issues that matter to you.

Being a carer can have a significant impact on your own health and emotional wellbeing. To provide safe and effective care for the person you’re supporting, you need to make sure your own needs are being met. It’s vital that you have access to the right information, advice, and support when you need it.

Children and young people with a muscle wasting or weakening condition have the right to an inclusive education that meets their needs. With careful planning, the right level of support, and a strong partnership between the school and the family, children can make the most of their time at school and the opportunities that education offers, as well as enjoy their school years.

We support people living with and affected by over 60 muscle wasting and weakening conditions. You can read detailed information on symptoms, causes, diagnosis and treatment of specific conditions in our A-Z.

Money can be a major cause of stress that you don’t need. We have practical and financial support available to help you with the costs of living with a muscle wasting or weakening condition.

Our free webinars offer you the opportunity to hear from expert speakers, share your experience and ask questions. They are held on Zoom so you can join from wherever you are in the UK.

Bereavement and loss can affect everyone differently, and there is no right or wrong way to feel. We have practical, financial and emotional support available. Speak to a qualified bereavement counsellor via live chat on our website.

When someone you care for is diagnosed with a muscle wasting condition it can often mean adjusting to a new and unexpected reality. It can have an impact on every part of your life, including your mental health and wellbeing. We have support for you.

Our helpline provides free information and emotional support to anyone living with a muscle wasting or weakening condition as well family members, carers and friends.