An organization devoted to helping Albertans affected by Parkinson disease has rebranded to ensure all money raised from fundraising efforts for services and programs will stay in the province.
Parkinson Alberta has become an independent organization, not affiliated with Parkinson Society Canada.
The move means every dollar raised in Alberta will stay and support programs and services in Alberta.
“The biggest issue came down to funds and what percentage of the funds was staying in Alberta,” said Brandi La Bonte with Parkinson Alberta.
La Bonte says the national organization was asking for more money from the local chapter and Parkinson Alberta believed that would have significantly affected local programs.
“We’ve got donors who will specify a certain place where they would like their money to go. It’s never a national body,” La Bonte said.
“100 per cent of our funds will be in our control and ours to do with, to serve our clients as best as we can. It is a pretty exciting thing it means great things for our clients. It means we can reach further, we can improve upon the services that we already do offer, expand programs into areas that maybe there aren’t anymore.”
'I couldn't control it'
Parkinson disease is the second most common neurodegenerative disorder after Alzheimer's.
The disease affects motor and non-motor functioning caused by a loss of dopamine in the brain.
Parkinson Alberta provides educational resources, support groups, counselling, speech, movement and art therapy programs for those affected – with six offices across the province.
Meg Bernard was involved with recent board discussions that eventually led to the decision to separate from the national organization.
Bernard was just 34-years-old when she was diagnosed with Parkinson’s in 2011.
She says it all began with a tremor in her finger.
“The tremor initially started in my index finger. It suddenly had a mind of its own and did its own thing and I couldn’t control it,” Bernard said.
“Now it’s progressed. It’s in my hand, it can be in my shoulder, in my leg, majority of my right side but this past summer I did start getting a tremor in my left side as well so it is a progressive disease so just when you think you kind of understand it and have it down, it changes.”
The average age of diagnosis with Parkinson disease is 60.
Early onset Parkinson’s – in people under the age of 40 – occurs in about five to 10 percent of those diagnosed.
Bernard says the day after she was diagnosed, she called the local Parkinson Society to learn as much as she could about the disease. She then became a local ambassador.
“It has been scary. It’s a life-changing thing. It’s taken a long time to get to a point where I’m able to openly discuss it and feel confident,” she said.
“It’s about my actions, it’s about just having that confidence in myself that I can carry on and maybe alter my goals but I can carry on my goals and make a difference in the world which is what I want to do.”
New brand, new charity walk
Parkinson Society Canada would not speak specifically about the details of the separation but officials say the organization will continue to support Albertans with the disease on a national level – through research and advocacy.
Bernard says she’s thrilled to see fundraising dollars stay in Alberta with the change.
“I’m really, really excited about that,” she said.
“There’s a lot of strength and motivation in our province to raise funds, to raise awareness, to support not just people with Parkinson’s but families, to provide education, to advocate, to do research and as we do these fundraising projects, as the money comes in, it’s going directly back to the people who are helping to bring these funds in, who do need that support.”
Along with the rebrand, Parkinson Alberta has also launched a new charity walk called Parkinson Step n 'Stride: Moving Albertans Forward.
The fundraiser is expected to draw more than 1,500 participants across eight communities this fall.
April is Parkinson Awareness Month.
It’s estimated one in 300 people live with Parkinson’s.
There are about 8,000 people in Alberta who have Parkinson disease.