Charities in Alberta face off over fundraising for Parkinson’s research

The battle over Parkinson's disease is more than a race to find a cure; it is also a jurisdictional spat that has pitted Parkinson Canada against Parkinson Alberta over revenue sharing and a possible trademark infringement.

And the two organizations will be competing head to head for Albertans' charitable donations next weekend with major fundraisers: Parkinson Canada's SuperWalk and Parkinson Alberta's Step 'n Stride, both set for Sept. 10-11.

For 40 years, the Parkinson Society of Alberta was a branch of the national organization the Parkinson Society of Canada. They also use the names Parkinson Canada and Parkinson Alberta.

The Alberta branch broke away in 2013 after the national organization asked the regional members to contribute some of their revenue to a national research program.

Parkinson Alberta CEO John Petryshen said that he created the solo venture "to keep Alberta money in Alberta for Albertans."

The Parkinson Society of Canada has run SuperWalk since 1990, and wants the Alberta group to stop using "Parkinson" and "Society" in its name.

Mr. Petryshen said he would prefer the national organization to stop its fundraising activities in Alberta.

"It's muddied the waters," he said. "People don't know who they're donating to. … Parkinson Canada continues fundraising in our province, asking you to support them nationally, all with no direct hands-on support, services or programing available to Albertans."

Parkinson Canada disputes the notion that it provides no services in the province. The Toronto-based organization has a website full of links to information, resources and programs in Alberta, said Marina Joseph, Parkinson Canada's director of communications and brand. Under research, it detailed what was being done, including the Neurology Health Charities Canada teaming with the Public Health Agency of Canada for a national brain strategy.

The controversy began in 2009, when the provincial branches and the national group, including Parkinson Alberta, voted to start a single, not-for-profit operation to oversee research and development. In 2013, regional organizations were asked to make a one-time payment of 22 per cent of their revenues to that entity, called Parkinson Canada.

The idea was not well-received on several fronts.

"What we all proposed, instead of us all struggling – and with the Parkinson Canada office trying to squeeze a diamond out of coal – wouldn't it make more sense for Parkinson Canada to redesign itself as a foundation and strictly support research?" Mr. Petryshen said. "That would let the regions focus in on helping people today – because the more people we help … the more people we can build a relationship with."

Building relationships with sponsors have become difficult in the current economic climate, for Parkinson Canada, and especially the breakaway Alberta organization. Mr. Petryshen said that he attended the 2014 World Congress on Parkinson's Disease in Montreal and felt like a outsider.

But he said he does not regret rejecting the request to share the provincial branch's revenue.

"That 22 per cent we would have given Parkinson's Canada, we invested that 22 per cent," he said. "We've got offices now in Lloydminster and in Grande Prairie. We're looking at Fort McMurray and Yellowknife because that's where we're getting calls. We're a proactive organization."