Chris Hall has made it his life goal to do what he can to ensure a cure for motor neurone disease (MND) is found.
The Leopold man was first impacted by the disease when a colleague was diagnosed with the MND six years ago, and since then raising funds for research has been his passion.
Despite the challenges of the past two years, his efforts have continued and he has ticked over $40,000 raised.
“Back in 2015 I was doing volunteer work at the McKellar Centre and I got to know some of the nurses out there pretty well,” Chris says.
“There was one nurse I got to know quite well when she’d give out the flu jabs each year and just one year she wasn’t there anymore.
“I asked where she was and they told me she had MND.
“I had never heard about MND, so I did some research to find out more.
“It was really sad because there was is no cure and there is no treatment, so to think that there’s people out there going through that, without that hope, I just knew I wanted to raise some money.
“Surely if we can raise enough money for research they’ll eventually be able to find a cure.”
Chris started his fundraising small, setting up a GoFundMe page with a target to raise $1500.
“When people found out what I was raising money for, they were very supportive and I was able to hit that target within a couple of months,” he says.
“So I just kept updating my target.
“I ended up raising just over $10,000 in that first year and I was really happy with that.
“But I thought if I could do that once, why couldn’t I do that again every year?
“Unfortunately with COVID the last two years, I haven’t been able to quite get there, but I’m really happy with what I have been able to raise.
“It’s just over $40,000 now since 2015, which I’ve done pretty much on my own through music events, trivia nights, raffles.
“I tried to think of doing any fundraiser that I could.”
Chris, who has spina bifida and uses a wheelchair, says the support he had received with his own medical issues was the catalyst for his commitment to giving back.
“I’ve always had a passion for helping other people I suppose because when I was a child I had a lot of help with my illness,” he says.
“My illness has nothing to do with MND, so people do often ask why I am I fundraising for MND and not for my disability, which is spina bifida.
“But we already know what causes it, which we don’t for MND.
“And then knowing someone that has got something like that, that spurred me on to try and help raise as much money as I could.
“I just want there to be a cure or a treatment for this disease because it is a scary thing to have.”
Motor neurone disease is a group of diseases that affect the motor nerves, which are responsible for movement.
As the disease affects the nerves, or motor neurons, they die off and muscles get weaker, limiting the person’s ability to use their muscles and eventually leading to paralysis.
It is a progressive disease that starts slowly and gets worse over time, with early symptoms including weakness in the hands and troubles with grip, slurred speech and muscles twitches.
However researches have yet been unable to determine what causes MND or a way to treat it.
Chris says that is the scariest part of the disease.
“From what I now know, while the body outside starts failing, your brain on the inside is still the same,” he says.
“That would be really scary to go through.
“So I’m going to keep doing what I am doing until there is a cure, even if that’s another 10 years away.”
Chris says his most memorable fundraiser was the very first music fundraiser he held.
“I love music so I did my first music fundraiser four years ago at the Black Hatt Hotel,” he says.
“I got some local small bands together, a couple of Melbourne bands, and they donated their time.
“We had four bands and they played for about six or seven hours, while we had a meal.
“Domino’s then donated some pizzas. The venue donated their time. Every little bit helped.
“There wasn’t a lot of people that turned up, there might have been 20 or 30 people, but it was a really good fundraiser.
“We raised probably $4,000 just from donations and the food, which was a lot more than I was expecting.
“It’s those moments when you realise how generous people can be in a small community.”
However, like for some many people, the COVID-19 pandemic has thrown a spanner into the works for Chris’ fundraising.
Without being able to hold as many in-person fundraisers over the past 18 months, he says it has been tough but he was looking forward to getting back into it.
“It’s been really difficult to keep going with the lockdowns,” he says.
“I was able to get one music fundraiser out between the lockdowns, after it was postponed a couple of times.
“I usually do a big event in November around my birthday, but we had to wait until January to do that one, which worked alright because it was the five-year anniversary of when I started.
“I also did things like the ice bucket challenge, which I do every year, and I grew and shaved my beard and things like that.
“I normally set myself a target of $1000 for things like that, but this year money was tighter for people as you would expect but I was still able to raise $700.
“I was really happy with that and thankful that people still donated, because a lot of people and businesses were doing it tough.
“I’m hoping to start planning something for early next year now, but it’s tough when there’s still restrictions around.
“I might have an online fundraiser like a trivia night or something simple, but I’m looking forward to when I can get back to doing some proper events again.”
The amount of time and effort Chris has put into fundraising has not gone unnoticed either, as he received a Pride of Australia award in 2018.
He says while he didn’t do it for the award, receiving the honour was one of his proudest moments.
“The award is nice and it gives you a boost that you’re doing the right thing,” he says.
“It’s really only myself, with the help of a few people behind the scenes, organising the fundraisers, so it’s a big job [and] I hate saying it but for someone in a wheelchair to be able to do that, to me that is a huge achievement.
“I’m really proud of what I have been able to achieve.”
Chris says his other greatest moment came when he had the chance to meet former footballer and Australia’s most notable MND campaigner, Neale Daniher.
“That was probably one of the best days of my life,” he says.
“Getting to meet someone that’s raised the millions of dollars that he has, and being able to talk to him as well [was special].
“Even as a footballer, I liked watching him but what he has done for MND is amazing.
“It was such an awesome moment.”
Anyone wanting to support Chris can donate at chuffed.org/project/wheel4mnd or join his Facebook group Wheel 4 MND.
