Sydney Kodatsky receives treatment for TPP, a rare blood disorder, at St. Michael's Hospital in Toronto Dec. 5, 2011.Moe Doiron/The Globe and Mail
Sydney Kodatsky knows how difficult it is to raise money for an illness few people have heard of.
Ms. Kodatsky, 31, has Thrombotic Thrombocytopenic Purpura, a rare blood condition that can be fatal and is characterized by clots forming throughout the body. She was diagnosed three years ago, a couple of months after getting married and graduating with an MBA from the University of Toronto.
"TTP has changed my life," Ms. Kodatsky said. "Treatment has required blood from now over 500 selfless blood donors."
She has had three relapses since 2008, the most recent coming last month. Treatment involves a blood plasma transfusion that can take several days to complete. The cause of the disease is unknown and research into it is scarce.
With the help of family and friends, Ms. Kodatsky raised about $100,000 over the last two years to fund research and treatment programs at St. Michael's Hospital in Toronto. Last summer, she went further and launched the Answering TTP Foundation as a registered charity. She has been trying to raise money and awareness about the disease ever since.
"It's hard to garner interest," she said, noting that there are so many charities dedicated to cancer and other diseases. "Not many people know someone with TTP."
She runs the foundation with her husband, Alec, while holding down a full-time job as a senior manager at Unilock Group of Companies. The organization has developed a brochure and a website to explain the illness and it has helped organize support groups.
But raising money "is more challenging than one would have hoped," she said. "For TTP there's an education process."
When asked how much of her spare time is devoted to the charity, Ms. Kodatsky laughed and said: "A lot."
Paul Waldie