By SHELLY BANJO
Jennifer Goodman Linn has one main mantra: Just keep going.
After being diagnosed in 2004 with sarcoma, a rare form of cancer, the former Nickelodeon marketing executive vowed that if she survived she would do something to show her gratitude.
This year, the 39-year-old looks to surpass $5 million in funds raised for rare cancer research at the Memorial Sloan Kettering Cancer Center through Cycle for Survival, a relay-style indoor team cycling event she and her husband, David, founded in 2007. Last year, 600 riders participated and raised $2.5 million.
As an avid cyclist, she says it was spinning classes that kept a semblance of normalcy in her life. Says Ms. Linn: "I might have cancer but cancer doesn't have me and the minute I change my life for the disease it wins."
After seven courses of chemotherapy and five major surgeries, this month she found out she was accepted into a new medical trial that stemmed from research financed through her own fund-raising at Cycle for Survival.
"Hopefully it helps me, but if it doesn't it will help someone with cancer in the future," she says.
The trial is part of about a dozen trials supported by Cycle for Survival, which is dedicated to funding research on what Ms. Linn calls orphan cancers, such as pancreatic, brain and pediatric cancers with a prevalence of 200,000 or fewer people a year.
Collectively, these diseases account for half of all cancers and affect millions of people. Individually they tend to receive less attention and funding from donors and pharmaceutical companies compared to what doctors refer to as the big four—breast, lung, colon and prostate cancers.
While the number of rare cancer cases has been steadily increasing, they attract fewer federal research dollars than more common forms of the disease, says Amy Carpenter, director of fund-raising programs for Memorial Sloan Kettering Cancer Center.
"We thought unless we raised billions of dollars we weren't going to make progress but trials for these rare cancers can cost as little as $100,000 and make a huge difference," Ms. Linn says.
Already, Cycle for Survival has supported breakthroughs such as clinical trials of a tumor-shrinking chemotherapy regimen and drugs that destroy sarcoma cells, as well as a study providing new insights into rare cancer tumor biology.
Due to seed funding for these trials, doctors are able to then attract additional funding from other donors and government grants.
"Within six months from the Cycle for Survival event we can report dollar for dollar where the funds will be spent and to which trials it will go to," Ms. Carpenter says. "The funds are quickly funneled into the labs and the doctors are putting it to use, it's very turnkey," Ms. Carpenter says.