First Post: Kidney March and Alport Syndrome

I'm starting this blog to draw more attention for the need for more research on kidney disease. I've been debating the best way to raise awareness and get people talking about the subject. My family is personally impacted by kidney disease and I know what its like dealing with a diagnosis that completely changes your life.

Our Story

My son Maximillian was diagnosed with Alport Syndrome, a rare genetic condition, that in the majority of cases leads to end stage renal failure. Its rarity varies. I've seen numbers ranging from 1 in 2,000 to 1 in 50,000 of those suffering from a chronic kidney disease (CKD). For over a year, my wife and I were shuttling back and forth from hospital emergency rooms to our home with a diagnosis of a urinary tract infection (UTI) - something which is rare for boys to get. One late evening at the Children's Hospital here in Calgary an emergency room doctor recognized us sitting in the waiting room. I can't remember his name anymore but I thank God he took an interest in us. He looked at Maximillian's charts and said something wasn't right so he sent us on to the nephrology clinic upstairs at the Children's.

A bunch of tests later, a few weeks of waiting, and in September 2011 we got a phone call that changed everything. Maximillian had Alport Syndrome. No cure. Few cases. We were totally blindsided. At the time I didn't know anything about the condition but soon found myself immersed in medical research journals, attending a medical conference in Minneapolis and looking at the Kidney Foundation for information on what to do and what to expect.

Then we found out my wife Evangeline had the same condition, and likely my daughter Jolie as well.

That's when the stats really started speaking to me. 1 in 10 Canadians has some sort of kidney disease. 80% of Canadians waiting for an organ donation are waiting for a kidney. Each year in Canada, as many people die of kidney failure as breast cancer. Considering the awareness level around breast cancer with all the walks, and days, dedicated to spreading knowledge about the disease that's a pretty stark comparison.

So I decided to do something. Anything.

I registered for the Kidney March.

I wanted to meet people, get to know people who've gone through dialysis and connect with medical professionals who could explain to me what my son and wife would go through.

I registered for the Kidney March in 2012 and decided at first to crew and help out those who were doing the 100 kilometer trek in 3 days. I also collected donations and challenged my friends, colleagues and family that if I raised $10,000 in 30 or so days I would walk the 100 kilometers. The response was huge, lots of people didn't know what the condition was but supported me generously. All the money raised went to research into Alport Syndrome through the ASF MacQuarie Fund operated by the Kidney Foundation. The Fund was setup by a Calgarian whose family has Alport Syndrome. The Kidney March was an incredible adventure and I felt enriched by the experience.

They produced a nifty video of the 2012 March:

After the Kidney March, I also got roped into joining the Kidney Foundation of Canada's Southern Alberta Board of Directors and doing the March again this year with the KidneyKids team from the Alberta Children's Hospital nephrology clinic.

So here I am again, fundraising, raising awareness, meeting new people, learning and doing my part towards finding a cure for Alport Syndrome specifically, and kidney disease in general.

The Kidney March starts on September 6 and goes for 3 days straight for a total of 100 kilometers from Kananaskis Country to Calgary Olympic Park with hundreds participating to raise money for programs and research.

Please consider making a tax deductible donation of $125, $75, or even $50, toward this great cause. Your support will make a difference in the life of my family and up to 2 million other Canadians living with, or at risk of, kidney disease.

I will update the website with pictures and thoughts from the March. I also plan to keep this blog going with information on kidney research, medical journal articles, book reviews, and some political musings.