The PKD Foundation of Canada helps promote awareness of and research into Polycystic Kidney Disease. Their Executive Director, Jeff Robertson, and Toronto Chapter Director Matan Volach joined me on Journey To Success Radio during Kidney Month in March.
The PKD Foundation of Canada is the only national organization solely dedicated to raising funds and awareness for polycystic kidney disease, or PKD.
The mission of the Foundation is to promote programs of research, advocacy, education, support and awareness, in order to discover treatments and an eventual cure for this often devastating disease. Both Jeff and Matan have personal ties to this hereditary disease, which serves as their fuel in the fight to end PKD.
Polycystic kidney disease (PKD for short) is a genetic disease that causes fluid filled cysts to attack the affected organ; predominantly the kidney. Over time, these cysts grow and multiply, causing the affected organ to increase sometimes dramatically in size. Approximately 1 in 500 – 1000 people are affected by PKD, and there is currently no cure. Until one is found, PKD will threaten the lives of every generation of every family affected. It equally affects men, women and children, regardless of age, race, geography or ethnic origin.
Starting as a provincial organization back in 1994 with one Toronto Chapter, the PKD Foundation of Canada incorporated on a national level 6 years ago and now has local Chapters stretching as far west as Vancouver, British Columbia and as far east as Corner Brook Newfoundland. These Chapters serve as the voice and support for the local PKD community, and provide people with a way to stay connected with one another on their PKD journeys.
Health Canada recently approved JINARC™ (tolvaptan), the first treatment in Canada for patients living with autosomal dominant polycystic kidney disease (ADPKD).
JINARC™ is a twice-daily, oral medication that’s indicated to slow the progression of kidney enlargement and should help protect the kidneys from damage and failure.
ADPKD is one of the most common, life-threatening genetic diseases and yet until now, patients have been without a treatment option that slows its progression. It is exciting for those living with ADPKD in Canada to have access to a treatment, and shows positive progress toward a treatment for all people with PKD.
“For so long, we have heard the overwhelming response from PKD patients that we desperately need to see a treatment made available here in Canada, and finally that day has come,” says Jeff Robertson, Executive Director for the PKD Foundation of Canada. “With a mother and grandmother impacted by ADPKD, our family knows just how life-changing a treatment like this will be for the PKD community.”
ADPKD impacts approximately 35,000–66,000 Canadians. and half of ADPKD patients reach end stage renal disease and require dialysis and/or a kidney transplant by age 54. It also comes with an emotional burden. According to a recent survey conducted among Canadians living with ADPKD, the vast majority (85 per cent) feel that having ADPKD has had a negative impact on their quality of life, and more than half (60 per cent) would like to have more control over the treatment of this disease.