Shut up! And help raise money and funds for MND

SHUT UP! For MND brings attention to what many Victorians living with Motor Neuron Disease (MND) face on a daily basis.

Each MND journey is different, but a number of people will lose their voice and become reliant on other forms of communication.

Trish Berryman’s husband, Jeff, was diagnosed with the diseases and together they went on a 17-month journey.

“The challenge started last year because of COVID we couldn’t do other fundraising,” the South Gippsland local said.

“We went through it, and it was tough.

“His journey, as I’m concerned, was very lucky, he never lost his ability to do all his personal care, whereas others cannot do any of that. 

“He said, ‘I don’t want people’s sympathy, I want their support’. Now, it’s my way of supporting those people who are suffering from MND.”

MND Victoria is the only not-for-profit organisation providing direct care to all Victorians living with the devastating disease, at no cost to them.

“The Big Freeze raises money that goes towards research, and without that we will never have a cure,” Trish explained.

“MND Victoria goes directly to patient support – wheelchairs, beds, whatever they need, computers for them to speak.

“On average two people a day are diagnosed and two people die a day with MND. Within Victoria there is about 441 patients.”

Joining Trish on Thursday outside Amcal Chemist will be her niece, Evie Piner.

“I decided to get involved because I had a really strong 

connection with my uncle Jeff,” Evie stated.

“Every holiday I wanted to see him, to be around him and when he got sick, I was only 10 years old, and with COVID my visits got less and less.

“The last time I visited him I couldn’t really talk to him, I couldn’t speak with him, but luckily before he died we got to wish him a happy birthday.

“I’m doing this because I don’t want other little girls and boys to miss out on time with their uncles, grandparents, dads or mums that suffer with MND.”

Evie will also be going back to school and telling assembly of her experience with the Shut Up! 12 Hour Challenge.

“I told my teacher and she said, ‘oh, you can’t shut up for 12 hours!’” Evie laughed.

Trish’s daughter will also be on hand to assist with donations (both cash and card).

“As my children said to me last year, it’s easy you just stay home. But there is a word – challenge, so I decided to challenge myself by sitting out in public and not speaking, which was very difficult when you’re well known in the town!” Trish laughed.

“The support from the locals was amazing – because it was done last minute last year, this year I’ve put it out there first; Evie will be sitting there with me.” 

“It’s not going to be as hard for me since I don’t know anyone in Leongatha,” Evie added.

Trish is also a big supporter of the Big Freeze.

“The Big Freeze and MND (Victoria) go hand in hand – you can’t have one without the other,” Trish said.

“You can’t have someone supporting patients, if you haven’t got someone doing research.

“What MND (Victoria) raises goes directly to patient support.

“We had an advisor that came to visit at home, any questions you ring up – to me it’s about doing it for awareness.”

MND first rose to prominence in July/August 2014 with the now viral Ice Bucket Challenge that kicked off in America.

“The Big Freeze put MND out there in the (Victorian) public with Neale Daniher – up until then we hadn’t heard much of it. 

“It’s a really weird disease because there are seven different types. Jeff’s started in his throat, where Neale Daniher started in his hands.

“The night before Jeff passed away in hospital, he was still walking around, he could still do his personal care, he couldn’t speak, and his breathing was compromised. He didn’t want anyone’s sympathy, he wanted support.

“It takes everything away from you.”

Catch a silent Trish and Evie from 10am to 2pm on Thursday (September 29) out the front of Amcal Chemist on Bair Street, Leongatha. 

Whether you can spare five cents or $5000, “every little bit helps – it all adds up.”