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Monday, April 21, 2014

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Parents lead in fundraising for research on IBD

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Marilyn Finkelstein

TORONTO — The Crohn’s and Colitis Foundation of Canada (CCFC), a leading funder of research into inflammatory bowel disease (IBD) in the country, began with a group of parent volunteers.

Its latest fundraising event is planned for May 8.

“When my son David was about nine years old, he became extremely ill. He went from a strapping, oversized child to an emaciated, sickly boy, and nobody could tell us what was wrong with him.  We thought he was going to die,” recalled Marilyn Finkelstein, who, with her late husband, Albert, founded CCFC in 1974.

Some three years after David became ill, still without a diagnosis for his condition, Finkelstein heard of Crohn’s disease, a term she had never before heard, she said in an interview in her home.

At the medical library at University of Toronto, she found a paragraph by Dr. John E. Lennard-Jones of England, describing the symptoms of Crohn’s disease. The instant she read this, she knew: “That’s what David’s got.”

It was 1973 and David was diagnosed shortly afterward.

IBD encompasses two similar yet distinct conditions, one called Crohn’s disease, the other, ulcerative colitis. IBD is a chronic and debilitating disease affecting more than 200,000 Canadian men, women and children, according to CCFC. Just over half  have Crohn’s disease and the rest have ulcerative colitis. Babies can be born with Crohn’s disease, but anyone can present symptoms at any age.

Canada has one of the highest incidence and prevalence rates of Crohn’s disease and ulcerative colitis in the world, with one in every 160 Canadians having IBD.

“As frustrated parents, we wanted to channel our energy into something positive,” Finkelstein said of the early years.

Dr. Richard Hamilton, a gastroenterologist at the Hospital for Sick Children (SickKids) was instrumental in getting his patients together with others across Canada in order to raise money for research.

“At that time, there was no Privacy Act, and Dr. Hamilton was able to provide me a list of his patients at SickKids Hospital.  I sat down and wrote a letter with the understanding that I didn’t know these families and had no idea how they would respond,” Finkelstein said.

“Sixty-four parents showed up in the basement of our home. We saw we were not alone – we were going to make something happen!” Finkelstein remembered with pride.

At that initial meeting was Dr. Fred Saibil, a gastroenterologist at Sunnybrook Health Sciences Centre, who, Finkelstein said, has been an invaluable partner in the mission to find the cure for IBD.

“Dedicated, determined, brave, smart, persistent, resourceful – these are words that come to mind when I think of Marilyn,” Saibil told The CJN in a telephone interview. “A mother with a sick child, and ultimately with more than one sick child [another son was later diagnosed with a different form of IBD], worked tirelessly to build this new organization and make it grow,” he said.

“We received $5,000 from Sick Kids Hospital Foundation through Dr. Hamilton, which was our seed money, and $500 from one of the parents from the first meeting.  This is how we began.” Finkelstein said.

Education is CCFC’s driving force.  “We knew if we brought awareness to Canadians…, we could offer individuals and their families the opportunity to form unique networks with others sharing similar experiences.

“Albert and I would criss-cross the country providing educational seminars… and we opened chapters that still exist today,” she said.

“In 1975 we raised $20,000 by holding draws, selling tickets, raffling a car for the purpose of research.”

A medical advisory board was established with Saibil and Hamilton playing key roles as leaders.

CCFC’s work led to the creation of a national charity that has raised more than $71 million for research, the best hope for finding a cure.

“The future is bright because research is very intensive in this field and the numbers of treatments and the kinds of treatments keep increasing and improving,” Saibil said.

CCFC’s annual fundraising event, the All That Glitters Gala – The Show Must Go On, to be held May 8, features an all-star lineup including members of the cast from the Broadway hit Jersey Boys and award-winning dancers from So You Think You Can Dance Canada, as well as silent and mystery auctions, great food and a Fund the Cure challenge.

Mimi Greenspoon, chair of the All That Glitters Gala has been involved with the foundation for over 23 years and certainly understands the importance of research.

“We lost our son, Lee, to IBD in November 2010. Lee foughtf hard, since he was diagnosed with Crohn’s disease when he was 16. He had multiple surgeries, was on every medical cocktail imaginable for years to ease the pain. Our Lee suffered for more than half his short life,” Greenspoon said in a phone interview.

“We are having this Gala for the families, all the families, so that in the future, our children and our children’s children do not have to go through the pain and suffering that Lee and our family went through."

Finkelstein agrees: “We must find a cure. My dream is to find a cure and be present at the closing meeting.”

The All That Glitters Gala will be held May 8 at the Allstream Centre in Exhibition Place, from 6-11 p.m. For tickets and further information, visit www.ccfc.ca.

 

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