Cycling to raise money for rare cancers

Alyssa Acquafredda's diagnosis came with two more disturbing realities: There's little money to research her rare cancer and no drugs designed to treat it.

Undaunted, the Long Island teacher has joined thousands of cancer survivors nationwide who've faced the same realities and are raising research dollars themselves.

"We're all fighting for the same cause," said Acquafredda, 25, of Deer Park, who is participating in an awareness-building fundraiser called Cycling for Survival.

Teams of indoor cyclists will gather at the Equinox gym in Roslyn from 8 a.m. to noon Saturday, logging miles in exchange for donations. Additional teams will use the stationary bikes at Equinox at 521 Fifth Ave., Manhattan, from 4 to 8 p.m. Saturday and at two Equinox locations on Sunday: 521 Fifth Ave. and Grand Central Terminal, both from 8 a.m. to noon and 1 to 5 p.m.

Rare cancers, when counted together, amount to half of all malignancies diagnosed annually in the United States. But some are so rare they affect as few as 50 people.

In Acquafredda's case, only 250 cases of angiosarcoma, the cancer that invaded her heart, are recorded in cancer registries each year across the country. There are multiple subtypes of sarcomas, which means no single drug or combination of drugs is useful from one to the next.

When Acquafredda's cancer was diagnosed two years ago, it had already spread to her lungs and back. "I've undergone nine different types of chemotherapy, and numerous MRIs and CT scans - so many I've lost count," she said.

Jennifer Goodman Linn of Manhattan founded Cycling for Survival in 2007, two years after being diagnosed with a rare sarcoma that invaded her abdomen. The nonprofit raised $2 million last year alone and hopes to beat that mark this weekend, with events on Long Island and elsewhere.

The money goes to the Memorial Sloan-Kettering Cancer Center, which has formed consortiums with other cancer centers nationwide, Linn said.

Dr. Gary Schwartz, chief of the center's melanoma and sarcoma division, will cycle over the weekend with a team called Paul's Posse. He said rare cancers receive virtually no respect from major pharmaceutical companies because they have such a small market share.

Schwartz said money raised from the cycling events is helping researchers understand the basic biology of rare cancers.