Volunteering, raising awareness and fundraising

People talked about getting involved in raising awareness and fundraising for MND-related causes, as well as volunteering. This section covers:

  • Fundraising and raising awareness
  • Volunteering

Fundraising and raising awareness

People we spoke to often felt passionate about making things better for families affected by MND, a cause they wanted to support actively themselves. Fundraising was one way people could help and some of the individuals we spoke to had been involved in sponsored events for MND charities, such as walks and runs (including marathons). Angi did a 2-week sponsored silence (which also raised awareness of speech loss in MND), and Alison and her husband travelled around Europe in their caravan to raise money for the MND Association and their local hospice, whilst blogging about the experience. Robyn remembers helping her great aunt at fundraising events as a child.

Anthony and Harriet shared their experiences of carrying the C9orf72 gene variant as part of fundraising. Since receiving his positive pre-symptomatic genetic test result, Anthony is more “proactive” in taking part in events to raise funds. He said, “it gives you… another meaning to your life, basically”.

Anthony is open in sharing his experiences of inherited MND when taking part in fundraising events. He feels with more awareness, there is a greater chance of a cure being found.

Raising awareness around MND was also important to others.

Robyn will tell “anybody that will listen” about her family’s experience of inherited MND. She believes there needs to be better public awareness on MND generally.

Dani has been involved in several charity campaigns around MND, including being part of a video for Global MND Awareness Day. As well as sponsored runs, JW’s family have been involved in a campaign to raise funds and awareness around inherited MND; he feels their story “humanised” it. He reflected on the money raised, “It’s a drop in the ocean really of how much it costs, but it’s something, you know? You feel like you’re getting somewhere”.  Other people found a benefit in taking part in fundraising and awareness raising events. Kirsty said, “little things like that… just make you feel like you’re doing something.

People had also been active in campaigning around other MND-related issues, such as David who used his contacts to encourage people to sign a petition related to treatments for MND. Karen and Georgia Y supported people’s right to choose their time of death and have been involved in campaigning for a change in the law to allow assisted dying.

People used a range of social media platforms to raise awareness and support others, including Facebook, Twitter, and Instagram. For Georgia Z, it was important to “do my mum and my aunt proud”. She has posted about her experiences on Instagram and would like to get involved in more work to raise awareness and help others affected by inherited MND, including other young carers. Not everyone was comfortable with sharing their experiences publicly or having photos visible online.


Volunteering was also something people had considered, to support other families affected by MND. Liz X trained as an MND Association visitor. At the time she was the first person with MND to do the role, which she started after giving up her job as her symptoms progressed. JW also considered volunteering but was advised not to, advice he feels was “spot on”. Having lost his wife and knowing his children could be affected, he finds it difficult to see others with the disease. He said, “the genetic one is just so insidious, and it’s not gone away and it won’t go away… I’d rather do other things with my life.”

Although she considered volunteering for the MND Association, Helen decided it would be “a bit too much”; she didn’t want her whole life to revolve around MND.

Calum volunteered with his local MND support group before the Covid-19 pandemic hit, as he hoped his digital skills could be useful. He wants to help them raise awareness but at the same time says, “I’m cautious of getting too tied into it, because those things can take over your life”. Dani talked about participating in a clinical trial at an information day for families affected by inherited MND. Niki has also volunteered to share her experiences.

Niki offered to get involved in training healthcare professionals from a carer’s perspective. She says, “Sometimes, sharing support is support in itself… by putting something back, you heal a little bit.”

People we spoke to often felt passionate about taking part in research, and Alison was also involved in advising research projects.

Being on an MND research advisory group is a “two-way street”. Alison values the opportunity to connect with others and ask questions.

Taking part in volunteering, raising awareness and fundraising wasn’t for everyone. Some people didn’t want to be reminded about MND or were happy to do certain things but at other times realised they needed a break.

Research in MND: views and experiences

This section covers people’s hopes and perspectives around research and clinical trials, as well as experiences of taking part. It includes: Keeping up to date...