The story of Bladder Cancer Canada(BCC) began with two people – David Guttman and Jack Moon. Their medical teams tended to the disease in their bodies, but they realized nourishment for their inner beings was missing–and was just as critical to their recovery.
They needed other bladder cancer patients to talk to about their fears and uncertainty. Someone to help them find up-to-date information about diagnosis, treatment options and prognosis. At that time, there was no one to turn to. So, in2009, they formed Bladder Cancer Canada to fill the void.
We talked with Jack Moon about the humble beginnings of BCC, its phenomenal growth over the past 12 years, and about Jack’s dream for the future.
“I was diagnosed with bladder cancer in 2005 and I found there was really no support for bladder cancer patients in Canada at that time,” says Jack. He got involved with some bladder cancer organizations in the United States, such as the Bladder Cancer Advocacy Network(BCAN).
Eventually Jack started thinking about what it would take to start a similar and asked organization in Canada. BCAN gave him the number for another Canadian bladder cancer patient–David Guttman.
“So, I contacted David,” says Jack. “We had lunch together and we got along extremely well. We both thought that starting a support group for bladder cancer patients in Canada was a great idea. We wanted to give the support that David and I never really got in Canada.”
Humble beginnings
David and Jack started BCC. It was a humble beginning, with Jack and David and their wives working at their kitchen tables
“In the beginning, we had no funding,” says Jack. “David drew up a one-page pamphlet and we went around to all the hospitals in the Toronto area and asked the urology departments or the doctors if we could put our information out there – and no one turned us down.”
From a simple pamphlet, their work grew. With help from volunteers, they created a website for BCC. Included in the site package was a discussion forum. That forum turned out to be an important element in BCC’s support philosophy.
“When we started in 2009, social\media wasn’t what it is today – not even close,” recalls Jack. “There wasn’t a lot of information out there for bladder cancer patients who wanted to be proactive.”
The discussion forum filled a critical informational and emotional need, says Jack. “In probably 95% of cases, when people are told they have cancer, they don’t hear anything else. I know I didn’t. I was in shock.” The discussion forum gave patients a place to turn to where they could meet others going through the same experiences. It helped to soften the shock of diagnosis.
Expanding BCC’s scope
Another key role for BCC would be funding bladder cancer research – something rare at the time.
“In those days, bladder cancer wasn’t really on the radar,” says Jack. “I could count on one hand the number of research projects that were going on in 2009. There really wasn’t the money available for research.”
David, Jack and their wives put together their resources to get things started. “We were able to give a small contribution of $20,000 and partnered with urologists on a couple of projects. And then it exploded!”
Exploded, it did. To date, BCC has funded bladder cancer research projects to the tune of approximately $2-million.
“When I look back, it was a lot of work,” says Jack of those early days of BCC. “But, you know, if we didn’t enjoy it, it wouldn’t have gotten done. We enjoyed everything we did.”
Creating the annual walk
David and Jack knew from watching other organizations, that a walk was a great way to raise funds for BCC. The first year, they set a goal of raising $5,000, which they rest at $10,000. “We ended up raising $26,000,” says Jack. “We were flabbergasted.”
But it was just the beginning. “In year three, the walk exploded. People walked in 12 cities and we raised $240,000. That was mind boggling,” says Jack. Today, the annual walk raises in the area of $600,000 at is held in about 22 cities across Canada. But the walk has a deeper meaning for Jack.
“We got to meet all the patients in person who we’ve been talking to through the discussion forum or on the phone. And that was very gratifying.”
For Jack, the past 12 years have been extremely satisfying. “We’ve been able to create an organization that meets the needs of bladder cancer patients in Canada and we’re doing things today that we never could have done without all the people who’ve been committed their time, energy and expertise to building on the foundation set 12 years ago.”
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This podcast/blog is generously sponsored by Bristol Myers Squibb, Pfizer Canada and EMD Serono.
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