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National charity founded by Newmarket family changing lives of people with rare kidney disease

Longtime residents Doug and Jan Robertson founded the PKD Foundation of Canada in 1993 after newly diagnosed Jan had her eyes opened to the lack of information here for those with Polycystic Kidney Disease

A local charity founded by a Newmarket family in 1993 is changing the lives of Canadians living with Polycystic Kidney Disease.

The PKD Foundation of Canada has spent the past three decades combating underfunding and lack of media interest surrounding one of Canada’s most prevalent genetic disorders.

Polycystic Kidney Disease, the mass development of cysts within the kidneys, is an affliction that vastly increases kidney size and weight and often spreads to other organs.

As the only national organization dedicated to the education, advocacy, support, and research of Polycystic Kidney Disease, the PKD Foundation of Canada is single-handedly turning the tide of awareness in Canada.

PKD affects approximately one in every 500 people, of all ages, genders, and races. Though the severity of the disease varies — some experience little to no symptoms while others experience chronic pain, hypertension, kidney stones, and more — more than 50 per cent of individuals experience kidney failure by age 60. The disease currently has no cure. 

For Jeff Robertson, executive director of the PKD Foundation and coordinator of the York Region chapter, the effects of PKD are all too familiar.

“The disease runs on my mother’s side,” said Robertson. “My mother is 67 and my grandma is 96, and they both live with the disease. My mother has a severe form and has had two liver transplants.

"For her first transplant, the liver they extracted was close to 40 pounds. My grandmother, meanwhile, has been lucky to lead a regular life.”

Co-founded by longtime Newmarket residents Doug and Jan Robertson — Jeff’s parents — in 1993, the PKD Foundation of Canada formed after newly diagnosed Jan had her eyes opened to the lack of information available to those with PKD in Canada.

Calling the American PKD Foundation connected her with a like-minded family in Milton who had experienced a PKD diagnosis of their own. Together, the two families founded the PKD Research Society of Canada, registering the group as a provincial charity in 1994. In 2007, newly appointed executive director Jeff Robertson rebranded the group into the PKD Foundation of Canada, establishing it as a national charity.

“My parents have lived in Newmarket since ‘83,” said Robertson. “My grandmother, Myrn, lives in Newmarket as well. Things have changed, but we’re still all back home.”

As with many non-profits, COVID-19 has seen changes to the way the PKD Foundation of Canada operates. Its annual Walk to End PKD fundraiser, which has raised almost $2 million to date for research and support services, went virtual this year.

To make up for cancelled fundraisers and educational events, the PKD Foundation of Canada introduced its first ever national webinars, available on their website. Robertson is happy to report that an average of 300 to 500 people attend each session.

“It’s a silver lining that has come out of COVID,” said Robertson. “We typically would rely on our chapters to provide education and support. But because of these webinars, people in areas without chapters now have the same.”

The PKD Foundation of Canada’s 13 national chapters focus on education and support for people and families affected by PKD, local fundraising, and public awareness. You can find out more about the foundation and its chapters here , and by following the foundation’s social media and signing up for the monthly e-newsletter to get notices of upcoming events and webinars.