Information for young people (OLD)

young person accessing our So What is MND Anyway web app on an iPad

If someone close to you has been diagnosed with MND, you may want to know what to expect. Our information may help answer your questions – choose from the options below.

“You can look here for help in your own time and space.” – Matthew,young carer


So what is MND, anyway guide coverIf you are aged up to 18, our guide So what is MND, anyway? can help you find out about the disease. It may help you get support, if you are helping with care tasks.

“If I had to go through it again, I’d want to know the background about the disease and the how and why. Also what happens next?” Young carer

If you’d like a printed copy of the guide contact our Young Connect helpline, as shown at the bottom of this page. You can also download the guide.

We also provide a web app of the guide (see next drop down option). 

You can make notes in the printed version of So what is MND, anyway? to remember questions and thoughts about MND. You can also download the notes pages to your computer or tablet.

A young person reading our web app for children and young people affected by MND.

This version of our guide So what is MND, anyway? works like an app from an app store, but can be read on a wide range of mobile devices, smart phones and tablets.

It is free to use and best to download when you are on Wi-Fi.  It will use about 5MB of space. You can save it to your mobile to use whenever you want (If downloads are not covered in your mobile contract, you may be charged).

Instructions for download are provided when you open the web app.

Children and Young People - 4-10's workbook coverIf you have younger sisters and brothers, this workbook may help them find out about MND and work out ways to cope with their feelings. They will need an adult to help them use it.

It is not available online. An adult can order it from

See also our web page for children aged 4 to 10.

We offer information for parents and guardians.  This may also be useful for teachers, social workers and other professionals who support children or young people close to someone with MND.

CYP - Books illustration

Our reading lists may be useful if you’re close to someone with MND. Let us know if you find something other children and young people would find helpful. Choose a list and click to open.

A reading list for young people

A reading list for children under 10

A reading list for children and young people with additional needs

If you’d like to order any information, share ideas for the reading lists or ask a question, contact our Young Connect helpline as shown in the drop-down option below.

For guidance about MND and support, contact:

Helpline: 0808 802 6262

“The fact that your helpline can be contacted by young people as well as adults is the best part. You’re here for us too.” Young carer

For 24-hour emotional support, up to the age of 19, you can also contact:

ChildLine logo

Helpline: 0800 1111

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  • Page last updated: 04/19
  • Next review: 04/21

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262