For young people affected by MND aged 19 to 25

"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 someone close to you has been diagnosed with MND, you may want to know what to expect. Our information can help. Find our publications about MND in Support and information and simple facts in About MND.

You may also find the following pages helpful if other family members or friends are looking for guidance:

For young children affected by MND aged 4 to 10

For young people affected by MND aged 11 to 18

For parents and guardians affected by MND

"Letting things out is so important. Just tell someone if it gets bad and why you're feeling that way. Don't struggle with everything in silence." 

Young carer

Why do I need support?

If you are aged 19 to 25 and someone close to you has motor neurone disease (MND), you may be providing care. You may also be in higher education or working. Whether you live with the person who has MND or not, their diagnosis and care is likely to have had a big impact on your life. 

"MND has a gradual drip-drip effect, but it's life changing. Things like a stairlift going in, rails and handles, and a seat in the shower...'

Young carer

As MND symptoms get worse, someone with MND needs increasing amounts of care. You may need help support from care workers who can visit the person at home. Contact our MND Connect helpline for guidance: telephone: 0808 802 6262 or email: [email protected] 

We also offer family counselling in partnership with Barnardo's, to support children and young people affected by MND or Kennedy's disease. To find out more, contact [email protected]

Can I get any financial help?

We offer support grants to help carers, along with grants for people with MND. Contact our MND Connect helpline, telephone: 0808 802 6262 or email: [email protected] 

If you have younger siblings, up to £250 can be awarded to a young person in any one year.

Can I get support at college or work?

Most colleges and universities have staff who act as contacts for young carers or young people affected by illness in their family. Find out who this contact is at your college, or talk things over with a tutor of your choice. They can discuss your needs and how best to help you.

Tutors and other support professionals may find it useful to visit our page for parents and guardians. Our information can help them understand your needs and how to provide effective support.

If you are working, let your line manager or HR representative know if you are finding it hard to balance work and caring responsibilities. There may be options they can offer, such as flexible hours, paid leave or unpaid leave to help.

Can I get support from other young people?

Sometimes, even if your own friends are supportive, it can help to meet other young people in a similar situation to yourself. Our local branches and groups may have opportunities to meet other people and join in with events.

"Maybe do some kind of activity with others who understand how you feel. Doing something positive helps to take you away from sadness or loss, and you feel you're accomplishing something too...Then you rebuild a sense of who you are as a person and what you're capable of doing."

Young carer

Find out about events for children and young people, that are run by the MND Association, by emailing [email protected] 

"You can do something positive, even when the situation seems as bad as it can get."

Young person affected by MND

If you'd like to get involved, there are many ways to do this with the MND Association, and with your local branches and groups.

If you're interested in any of the options on this page, email: [email protected]

Fundraising

See our fundraising events to find out more about the type of activities on offer. Some events may be suitable for schools and colleges. We may be able to provide guidance for teachers or youth leaders. 

Campaigning or volunteering

If you'd like to help people living with MND get the support they need, you may enjoy becoming a campaigner or volunteer. We have branches and groups across the UK who provide a warm welcome to families who'd like to get involved.

See also our web pages about campaigning and volunteering if you would like  to find out more.

Find suggestions below to help you search for organisations that support young people.

Contact our MND Connect helpline for guidance about MND support services, telephone: 0808 802 6262 or email: [email protected]

"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

To find out about our own services for children and young people, contact [email protected]

We also provide links to wider organisations that may help parents and guardians affected by MND.

Urgent support

Emergency Services - Tel: 999
For ambulance, police or fire services.

Urgent health advice in England - Tel: 111
For urgent, but non-emergency health advice.

Urgent health advice in Northern Ireland
This online page will help you find out-of-hours medical guidance.

Urgent health advice in Wales - Tel: 111
For urgent, but non-emergency health advice.

Emotional support

Hope Support Services - Tel: 01989 566317
Online emotional support for children and young people aged 11 and over facing a family health crisis offering email, one to one and peer support. Email: [email protected]

Kooth
Online chat with qualified counsellors.

Student Minds
Emotional wellbeing support for students.

Young Minds - Tel: 0808 802 5544
Support for the emotional wellbeing and mental health of children and young people. Mon- Fri 9.30am – 4pm, Email: [email protected]

The Mix
An online guide to life for 16-25 year olds in the UK, offering non-judgemental support and information.

Support for young carers

Carers Trust
Support for carers and young carers. Email: [email protected]

Go Beyond - Tel: 01822 811020
Free respite breaks for disadvantaged children, including young carers, from all over the UK. Email: [email protected]

Bereavement support

Winston's Wish - Tel: 08452 030405
Support for bereaved children, young people and their families.

Child Bereavement UK - Tel: 0800 028 8840
Support to help families rebuild their lives when someone close to them dies. Email: [email protected]

Hope Again - Tel: 0844 477 9400
Support, advice and information for children, young people and adults when someone close to them dies. Email: [email protected]

Grief Encounter - Tel: 020 8371 8455
Bereavement support for children and young people. Email: [email protected] and [email protected]

Here are a few messages from other young people who have experienced MND in their family. You can find more in our information for young people.

Finding a way through

"You need someone to tell you it will be okay in the end. Not that there will be a cure or anything,  but that you will find a way to get through the sadness and live your own life. Because you will."

"There are positives, you just have to look for them and appreciate them for what they are. Special moments, new skills, learning how to deal with difficult situations - these are all things you can carry with you in life."

Becoming stronger

"I can go into survival mode really easily now. You learn to look after yourself and other people."

"I never want to let go of the emotions I've been through, because they made me who I am. And I like who I am."

"I'm stronger now because of everything that happened...and I think it's true for my whole family now."

It's okay to feel down

"I think we all feel a bit lonely and isolated when MND hits our family. It's easy to feel angry and guilty too, but it's not so strange really is it? Let yourself off the hook a bit."

"Someone I trusted told me it was okay to feel angry or show that I was upset. You can read things like that all day long, but it doesn't quite sink in. He gave me permission to show my feelings, which really helped."

Being you

"If MND has taught me anything, it is firstly that it is fine to laugh at the things you laughed at before."

"It's hard, but through all of this, you cannot let it stop you making your own choices and getting on with life."

"Take a deep breath in every now and then, and make the most of whatever is going on."

Young carer

"It helps knowing other people are going through similar things and feel the same way."

Young carer

"It's important to do normal stuff like hang out with your friends, otherwise it's not a normal life."

Young carer