Inherited motor neurone disease (MND)
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.
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.
If I do my fundraising, so this Prudential 100, I will probably put on Facebook that I have the gene and I’m raising money for MNDA for that reason. And it’s part of who I am, basically, so it’s not, you know… I’d rather the more people are aware, probably the greater probability of a cure being found. Even if it’s one, two, three, it multiplies up.
Like public awareness?
Yeah, yeah. I don’t think… there’s no, I don’t see the reason not to, if you’re having a conversation and you know, ‘I’m doing this, raising this money,’ I don’t see why you wouldn’t just say, ‘I’ve got the genetic default,’ you know? I mean, if you see the interview with Doddie Weir and stuff, it’s quite emotional when they talk about it on the BBC, so you know, I think… and my awareness course, you’ve got to let your emotions out and live in the present, basically. Even though, yeah, I’ve probably bottled things up in the past, I’ve got no qualms about saying what I’ve got [laughs].
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.
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.
There’s a lot of people don’t know what it is, and I was totally in that camp before it happened to me - not me, but obviously to my dad, but happened to our family. And you don’t understand until, I don’t think you understand until you go through it. So, I like to tell, I will tell anybody that will listen about what happens and how I dealt with it and what we went through, because I just, I want to try and - it’s not to educate people, but I just want people to know that it’s out there and it’s awful. It’s one of the most awful things that I can think of, and a lot of people don’t even know what it is, so.
Everyone did that ice bucket challenge back in like 2012 or something like that, but nobody actually knew what it was for. And with MND… 100% I’m not saying that I’m perfect because there is a lot of things I don’t know what they are, you know. I don’t know what a lot of charities do, I don’t know what a lot of illnesses are, and I don’t know how they affect people, so I understand why people don’t know what it is. But if anyone’s speaking to me, a lot of people say, “I’m really sorry, I don’t know what MND is”, and that’s where I’ll be like, “Well blah, blah”, you know, I don’t hold it against anybody. But definitely I would, I just like to tell people so that they know, and it just means that more people are aware of it…
So it’s like awareness raising really?
Yeah. I mean I’m sure, I think I remember a story when my dad got chucked out of a pub because they thought he was too drunk when actually he just couldn’t walk because of MND. And I just think we need to, instead of seeing somebody struggling down the street limping or being unable to speak, why do we automatically think that they’re drunk or why do we automatically think that there’s something, you know, there’s not something else wrong. That’s maybe not what’s wrong with them.
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
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.
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.
(Text edited by Helen)
I’d applied to be, I can’t remember what they were called. Working for the, as a volunteer for the Motor Neurone Disease Association as an Association Visitor, where you would actually go and visit people with Motor Neurone Disease in their homes and just provide, you know, provide information about what the Association could do to help them and stuff like that.
So I’d sort of gone for an interview to do that and been accepted. But actually once I’d done the training I was starting to think, “Mm, maybe that’s actually a little bit full on.” You know, it was something I thought maybe I wanted to do in the back of my mind, but as it was sort of, as I started getting more information about our particular gene and working where I was working, I started to think maybe it was a bit too much for us to do something like that: it would maybe just be a bit too upsetting. And I didn’t want to turn my whole life to, my whole life to be about motor neurone disease – I’d end up pretty miserable, I think.
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.”
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.”
What I did offer to do, and actually it would end up probably being a support to me in some ways, is when I was working I did a lot of training and I think many of the people that we came across in the hospital, in the specialist unit, in the community team and elsewhere, found us sort of quite unusual. I don’t know why [laughs]. And they have asked, they’ve said, you know, “If we were doing training, would you come back and talk things through with care staff from a relative/carer’s perspective?” And I certainly would. The respiratory consultant at the unit who has particular interest in motor neurone disease and who tended to see all the MND patients through is a very forward-thinking man, and… so those things might be a very real possibility because, I think sometimes, sharing support is support in itself. That’s my experience. And you, you can then sort of put something back, and by putting something back, you heal a little bit, if that makes any sense.
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.
Being on an MND research advisory group is a “two-way street”. Alison values the opportunity to connect with others and ask questions.
I’m fortunate in that I am on a motor neurone disease research advisory group. Certainly when I started as a new member of that group, it was the only motor neurone disease research advisory group in the country. And so we have quite a lot of researchers coming into the group and presenting their research, and that’s a great opportunity to ask questions, it really is. I mean, that’s how I first met the guy who is my consultant now, he came into the group to present his research. So it is a great opportunity to ask questions. It’s sometimes better than a consultation [laughs].
So, I’ve got that facility as well, and the fact that I’m going to the group – it’s remote meetings now, unfortunately. Although I say unfortunately, I don’t know why you know, remote meetings- particularly as there are now, I think, four people on the group living with motor neurone disease - it makes sense even if they’re meeting. You know, somebody can be a remote addition to the group, or the whole group can meet remotely. And if it means it happens regularly, then I think that would be a good thing to do. But it’s a great source of information, so it’s definitely a two-way street.
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.
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