We spoke to Liv about how she found taking part in a Huntington's Disease Association fundraiser.
Fundraising gives me a sense of purpose and it gives me a sense of control over something that is so hard to have control over. It helps me feel empowered and like I can do something good out of such a devastating condition.
My name is Liv I'm currently at risk from Huntington's. I didn't know about Huntington's until the age of 17, it was hidden from me. I asked why I didn’t see my Grandad because I was close to him growing up and then I just didn't see him anymore. Basically he was in a care home and Mum told me that we have Huntington’s in our family. I researched it and wanted to get tested when I was 18 but Mum went through the process first, sadly she became symptomatic before she got her results and it was very difficult to even get her diagnosis as she was in and out of the psych unit. In May 2021 I went with an ex-partner to my first appointment thinking that I was ready but then we found out my mum had the gene. I'm still currently at risk and I also have a younger brother that is also at risk. She passed away this year as a result of not being treated that well with the care that she received.
Why is fundraising important to you?
"Fundraising gives me a sense of purpose and it gives me a sense of control over something that is so hard to have control over. It helps me feel empowered and like I can do something good out of such a devastating condition. and I was just so happy to be able to raise a thousand pounds in such a short time and to know that I am giving something back."
Can you tell us about your fundraising challenge?
"I'd never done a fundraiser for the Huntington’s Disease Association before and I just saw on their social media about this Halloween trick or trail idea. It involved a walk and dressing up and I promoted it at my work for Mental Health Day and I managed to raise £1,000. I got my friends and work colleagues to join in and we gave out the leaflets, stickers and things that the charity provided for my fundraiser. It was so simple to do like the Huntington’s Disease Association just had the printouts that you could just put out for each kilometre that you walked and it was just a nice, fun, light-hearted idea that was just easy to do."
How did you find the process of setting up your fundraiser?
"It was so easy to set up. I set up a Just Giving page and the Huntington’s Disease Association had an actual donation page for that fundraiser. Then I set a goal and wrote a bio about how Huntington’s has affected me and what it was and then it just automatically went on that main fundraising page. It was just so simple to do. I was completely blown away because my target was only £200 and I hit £1,000 and made it into the Just Giving top fundraisers for October."
Did you feel supported with your fundraiser?
"I felt supported from the beginning to the end of the fundraiser. I was speaking to the fundraising team and getting sent lots of goodies to help me promote it, spread the word and get donations. Again it was so simple they sent me the images to print for each kilometre so that you could make it fun and even after my fundraiser, they sent me a nice little gift like a badge and a congratulations for the donations for the charity which is so lovely to receive. It was handwritten and really personal. I think they have the best ideas for fundraising and they just go out of their way to help create these ideas. I would just say do it don't worry if it's last minute because you may be really surprised about how well it did as I said, to raise £1,000 in three weeks and I felt 100% supported throughout by the Huntington’s Disease Association."
I really would recommend anyone who wants to get involved in fundraising to just have a look at the Huntington's Disease Association website for ideas. You can get your friends involved - they are posting fundraising ideas every month and if one of them takes your fancy.
Why did you choose this fundraiser?
"I love Halloween and I love dressing up and stuff like that I think it's really hard when you're impacted by Huntington's so to have a little bit of an escape to do something fun and light-hearted and also if you're struggling and you know you can get involved in a last minute idea, that gives you like a little bit of a goal to work towards. I think that it's an amazing fundraiser to do, and I really, really recommend it. It was so much fun."
What advice would you give people who are thinking about fundraising?
"I’d definitely do it and definitely check out the Huntington’s Disease Association fundraising ideas page because they have so many quick ideas. If anything like me and I'm indecisive, they kind of just prompt you. I'm so glad that I started fundraising because it has made me feel like I have control over Huntington's and you know all of this bad stuff that has happened in my life, something good can come out of that and it is empowering."
It's nice when you can get your friends involved because it's a way to raise the topic of Huntington's and make people more aware of it. It's so difficult to explain to people, so doing it helps get the word out and if you can do it with your friends, it kind of just makes it a bit more light-hearted and easier to tell them about so yeah if you're thinking about fundraising I'd say do it you won't regret it.
Thank you to Liv for sharing this story with us.
If this has inspired you, you can find more challenges and fundraising stories below.
