Goodman Linn has what her doctors call a rare form of a rare cancer — an MFH sarcoma, also known as an undifferentiated high grade pleiomorphic sarcoma. It’s remained confined to her retroperitoneal area, but, she says “it’s pesky and it keeps on coming back.”

With no more than about 1,500 cases in the U.S., the cancer carries a five-year survival rate of about 50%. Goodman Linn is just past that five-year mark, and she gives some of the credit for that to cycling.

“I love spinning,” she said. “It took on new meaning for me when I was sick because I felt like the spinning class represented my battle, and every hill was my fight against the disease.”

That fight has been largely without a road map. Funding for rare cancers — what Goodman Linn calls “orphan cancers” — is a drop in the bucket compared with support for breast, lung, colorectal, and prostate cancers. Hence, treatment strategies are not as evolved as the regimens for the “big four” — her term.

There are no established therapies, no targeted therapies, no biomarker tests to see if she’d respond better to one regimen than another.

In fact, Goodman Linn’s tried seven different chemotherapy cocktails to keep her disease at bay.

“When someone is diagnosed with cancer, they should be able to say, ‘What’s the plan?'” Goodman Linn said during an interview at her Manhattan apartment. “They shouldn’t have to ask, ‘IS there a plan?'”

The Harvard Business School graduate and marketing executive — she’s worked for companies such as Nickelodeon and Ann Taylor and continues to develop strategies for Fortune 500 clients — has a plan to change that.

She and her husband Dave, married just over a year before her diagnosis, started Cycle for Survival in 2007 to support research not only on sarcoma, but for other orphan cancers — those that affect fewer than 200,000 patients a year, among them melanoma, ovarian, pancreatic, and all the pediatric cancers.

“There are millions of people like me who live in fear, and it’s not fun to live in fear and to think, ‘If the cancer comes back, what are they going to try on me next?'” she said.

What is now an annual indoor team event, Cycle for Survival started out with 50 bikes in a local gym. Spinning with friends and family, Jen and Dave raised $200,000 at that first event. The next year, they brought in $600,000. In 2009, and with Equinox gyms as an official partner, they topped $1 million.

The 2010 event that took place last January raised nearly $2.5 million, and Goodman Linn expects more than 800 teams to participate in the 2011 Cycle for Survival, which will take place at Equinox gyms in New York, Chicago, and Long Island.

The funds have already supported more than a dozen rare cancer trials.

“Even just $100,000 can make a huge difference when it comes to a trial, because we’re not trying to create new drugs and bring them to market,” Goodman Linn said. “That costs billions, and we’ll leave the pharmaceutical companies to that. What we try to do is stimulate more research.”

Gary K. Schwartz, chief of the melanoma and sarcoma program at Memorial Sloan-Kettering Cancer Center — where Goodman Linn is being treated — says that’s exactly what the funding has supported.

Cycle for Survival funding has supported initiatives to improve understanding of the basic biology of these tumors in order to learn “what makes them grow, proliferate, and ultimately find new ways to target drugs against them,” Schwartz told MedPage Today.

He added that “grassroots funding” from events like Cycle for Survival is becoming even more important as more grants are competing for smaller pools of federal money.

Another program that’s gotten Cycle for Survival funds focuses on inhibiting two new stem cell pathways that have shown some promise in rare cancers — notch and hedgehog.

Researchers at Memorial Sloan-Kettering are also looking at a combination of insulin-like growth factor receptor (IGFR) and mTOR inhibitors to curb sarcoma growth.

“Cycle for Survival gave us the seed money to do the preclinical work necessary to develop hypotheses to suggest these drugs will work,” Schwartz said.

Even though Schwartz has caught some of Goodman Linn’s infectious optimism, he’s careful to temper his enthusiasm.

“These studies are in the early stages,” he said. “We have to find out … how best to sequence them, what are the best combinations. There are a lot of things we don’t know.”

“Are we going to find these new therapies in time for Jen to benefit from them?” he continued. “We hope she will.”

Goodman Linn, of course, remains optimistic about that.

“What’s exciting to me is hopefully one day I might be the beneficiary of this research,” she says.

Even more rewarding, she says, is the legacy the fundraiser will leave. She’s confident that the partnerships with Memorial Sloan-Kettering and Equinox will ensure that Cycle for Survival continues to raise awareness of — as well as funds for — rare cancers.

“It seems that many great charities die out after a few years because the founders don’t have the time, the energy, or the resources to keep it going,” she said. “We didn’t want that to happen … so we showed [Memorial Sloan Kettering and Equinox] business results that we could take something from great to fantastic.”

“I love that … now there’s a legacy,” Goodman Linn said, “and hopefully Cycle for Survival will keep growing and hopefully be here forever, helping millions of people.”

Goodman Linn is now preparing for her sixth resection. She’s posting updates about her treatment on her blog.