Related content: Check out our gallery from Sunday’s walk.
Port Macquarie’s Bev Smith knows too well the challenges Motor Neurone Disease can have on a family.
She nursed her daughter’s mother-in-law, Robbi Skinner, through the disease and during this period realised more education and fund raising at the local level was required.
Bev is considered the heart and soul of the MND Walk To d’Feet which was held on Sunday. The day included a return walk from Westport Park to Town Beach.
“In 2010 Robbi was typing away at her computer and her two little fingers wouldn’t work. She had lost control of their movement,” Bev said.
“Her local doctor’s thought she’d suffered a stroke but a Newcastle specialist eventually diagnosed her with MND.
“It was the first time I’d ever heard of the disease,” she said.
After getting more information through Robbi’s battle, Bev saw the need for more understanding and, importantly, the need to start fund raising.
“It is just an insidious disease. In Robbi’s case, she was eventually wheelchair-bound after it took over her entire body. In the end, she couldn’t even feed herself. Motor Neurone Disease takes away your body but your brain is still fully functioning.”
Motor Neurone Disease takes away your body but your brain is still fully functioning
Bev praised the state body for its support programs and help through supplying wheelchairs, beds 'or anything that you need’.
Since that first walk and fund raiser six years ago, Bev has raised more than $180,000 for MND NSW and has been honoured with an Australian award of recognition from the organisation.
She says one of the major pluses of her efforts is that more information and understanding surrounding MND is getting out in the public discussion.
“It is being more readily recognised,” she said.
But there is a downside. The more discussion taking place only brings the names of more and more local people who are sufferers.
“You don’t realise until you start talking to people about this disease that you understand how widespread it really is in this community,” Bev said.
Sunday’s walk raised about $15,000 with 168 pre-registrations. However, with a late rush of participants, that number ballooned out to over 200 for the walk.