When you have a child, or children, with a muscle wasting or weakening condition there is so much that you need to consider when it comes to meeting their everyday needs. It can feel overwhelming, but you are not alone. Our support team is here to offer advice and guidance to parents, as well as professionals, and young people.

We can help you:

• Get the right level of support for your child’s special educational needs (SEN)
• Introduce adaptations in the school
• Get support with moving into higher education.

There is a range of support available at both school and university level to help children and young people fulfil their long-term goals and aspirations. This includes getting access to further education or employment.

For help and advice on educational needs and access to employment, contact our support team.

We know that for children with a muscle wasting or weakening condition to thrive at school, a strong partnership between families and schools is essential.

Our guide – Inclusive education for children with muscle wasting conditions: a guide for schools and parents – is currently being updated and is temporarily unavailable.

It was developed with input from health, education and care professionals, parents, and staff from specialist voluntary organisations. The guide offers practical advice and strategies to support inclusive education at every stage – from early years to secondary school.

If you need information or support in the meantime, please get in touch with our helpline team.