Coaxing cancer researchers to take your money
5/23/2007 web-based article Amy Dockser Marcus Checkbiotech.org In 2004, Marnie Kaufman was diagnosed with a rare, little-understood cancer. There was no effective chemotherapy. Her husband Jeffrey's first thoughts turned to how to jump-start research. "Jeff wanted to raise money and give it to anyone walking down the hall of the hospital," Mrs. Kaufman recounts. But after meeting with David Sidransky, director of head-and-neck-cancer research at Johns Hopkins University, and asking him to work on the organization they started, Dr. Sidransky told them to think about an issue they never anticipated: What if no one wanted their cash? Budgets are tight at the National Institutes of Health, labs are scrambling to find funding, and many private foundations and pharmaceutical companies don't invest in research for rare cancers. But for many patient advocates, there is a further obstacle. Sometimes they raise money and get no takers. A friend of the Kaufmans who started his own rare-cancer advocacy group gave the phenomenon a name: the doom loop. Some researchers -- tired of getting turned down for grants and fearing there will be no funding to sustain long-term research -- don't bother applying even when money becomes available. To avoid that trap, the Kaufmans tried something different. They raised more than $700,000 for Mrs. Kaufman's disease, a salivary-gland tumor called adenoid cystic carcinoma, or ACC, and then, instead of sending out a call for proposals and waiting for responses that might never arrive, they took matters into their own hands. Working with a small, [...]