Two Quinns Rocks children are selling lemonade to raise money in the fight against MND.
Hugh and Novella’s father Graham is currently fighting Motor Neuron Disease, a disease which is neurodegenerative.
The lemonade stand, which has been wildly successful with the local community – attracting radio, online news, and a member of parliament – is raising funds for the MNDI Foundation.
WAMN News visited the lemonade stand and spoke to the mother of Hugh and Novella, Jacinta.
She explained that her husband was diagnosed with MND last year, at only 38 years of age.
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“They [Hugh and Novella] know that there’s no cure at the moment,” she said.
“So they wanted to give some money to scientists to try and find a cure.
“So that’s what we’re about here today.
“Trying to find a cure, donate some money for a MNDI charity.”
She also said that they are hoping the event creates greater awareness regarding the disease.
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“We always live in hope for a cure,” she said.
MND is a neurological disease which impacts muscle deterioration in the body.
“He [Graham] is now in a wheelchair, [he] requires a lot of help to walk, so he needs assistance to walk from one room to the other,” said Jacinta.
“Also, his speech is affected so it’s hard to understand him at times.
“And he now has no hand movements, so his independence has really diminished over the last year.
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“And it’s just been really heartbreaking to watch the whole process.”
Jacinta and her family found the MND Association to be great help in getting support from the NDIS.
She also said that she is “so proud” of her children for having the idea.
“It’s developed into something bigger than we ever thought it would,” said Jacinta.
“We started off just doing two hours.
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“And then the second time we did three hours, and now this one.
“We’re just so proud of them.”
The idea, specifically, came from Hugh.
“I was tucking him into bed at night and he said, ‘Mum, why isn’t there a cure’, and I explained that it takes a lot of money and time for people to research, and scientists are looking into it,” she said.
“But unfortunately there isn’t a cure at the moment, and he said he would really like to give some money to help find a cure.
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“See, he doesn’t want his dad to get worse.
“He wants his Dad to get better.”
Jacinta said that the turnout to the events so far has been amazing.
“And then today’s just been next level with turnout as well,” she said.
“People have been really generous.
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“So we’ve had local members from MP today, we’ve had the news, we’ve had radio station, loads of friends and family.
“So everyone’s spreading their time out coming regularly, throughout the time that we’re selling today.”
Jacinta said that she is “very grateful for the support”.
Her husband also asked Jacinta to say something on his behalf, due to MND affecting his voice.
Currently an overseas biotech company, Coya Therapeutics, recently developed and tested an immune therapy called Coya 302.
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“It enhances the number and reduces dysfunctional tregs,” she said.
“So in the pre-clinical studies, that’s now been peer reviewed and published, It’s been proven to stop the progression of MND in four out of the six patients that have been treated for six months.
“And so the whole trial so far went for six months, and Graham would love the Minister of Health and TGA to reach out to Coya and offer to fund phase two trial in Australia.
“So the other great news is that Coya 302 has also been developed for MND, Parkinson’s disease, and temporal dementia as well.
“So if the Government did reach out and trial that here then it would benefit so many other diseases, not just MND.
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“So if anyone is looking for extra information on it, jump online and have a read because it is really promising and we’d love to have that available here in Australia for other MND patients as well.”
Currently in Australia there has been no drug progression since the 1990s.
Graham is currently on a trial drug called Lighthouse 2 in Australia thanks to the Perron Institute.
“We have been overseas to get some stem cell, and we had two beautiful friends that started a GoFundMe page for us to be able to do that, just in hope of slowing down the progression,” said Jacinta.
“It’s not a cure going overseas for stem cell, but when there’s nothing available here to treat it, we just felt like we couldn’t just sit here and let the disease take over.
“So we trialed that and we just, we live in hope every day that a miracle cure is found.”
You can donate to help Graham and his family through the link below.