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Crowd-funding draws on generosity of many

Robert Stone, center, is shown with his family, from left, sister Edith, father Roger and mother Jeneva, at their home in Bethesda, Maryland. Robert, 14, suffers from an undiagnosed affliction and the family is looking for funding through the Internet to map his genome to help find the cause.
Gus G. Sentementes Baltimore Sun

BALTIMORE – Robert Stone was a healthy baby until he was 13 months old. Then, in the course of three or four days, he became unresponsive and lost the use of his limbs. His bewildered parents put him through one medical test after another, each yielding inconclusive results, for 13 years.

The next step for the Stone family is to have the boy’s genetic material mapped in an attempt to find the cause of his illness. But that costs a minimum of $7,500, and insurance doesn’t cover it.

So the family has turned to the Internet and a new Baltimore startup – a nonprofit founded by a Johns Hopkins University graduate student – for help.

Using the increasingly popular approach of raising money via the Internet, the nonprofit Rare Genomics Institute has built a website that promises to help families such as the Stones raise money to fund costly genome sequencing.

“It’s a little scary to ask people for money,” Robert’s mother, Jeneva Stone, said of the crowd-funding. “But if we can get 750 people to give $10, surely we can find that many people.”

Several similar websites, such as Kickstarter.com, Razoo.com, IndieGogo.com and CrowdRise.com, are helping artists, musicians and nonprofits run campaigns to tap online giving. Such sites have helped raise millions of dollars and are redefining how people launch new business ventures and philanthropic endeavors, according to giving experts.

“You don’t have to be Bill Gates to make a difference,” said David Lam, vice president of strategy for Washington, D.C.-based Razoo.com, which has funneled more than $52 million to nonprofits since starting in 2008. “Even if you give $10, that’s a good step.”

Jimmy Lin, the founder of the Rare Genomics Institute and a Johns Hopkins Ph.D. and medical degree candidate, wanted to bring the crowd-funding model to undiagnosed or rare diseases. They number in the thousands but don’t attract as much attention from government and university researchers, foundations and biopharmaceutical companies.

“The traditional funding model from the top down (for government medical research) or from foundations is very hard to reach these patients,” said Lin, 32, a native of Taiwan.

Lin plans to seek foundation funding to help with startup and operational costs, and people who visit the website can donate to support Rare Genomics’ overall work, in addition to individual children’s campaigns. Rare Genomics allows the patients to keep 100 percent of the donations they raise; typically, crowd-funding sites take a small percentage of the money raised as revenue.

Lin hopes to fill a need within the loose-knit community of families and researchers who work on undiagnosed diseases.

Advocates say it’s not clear how many people suffer from unknown ailments because there is no central data-gathering effort.

Raising funds through individual giving is still important, said Buffy Beaudoin-Schwartz, spokeswoman for the Association of Baltimore Area Grantmakers.

“I think the notion of collaborative giving is something that is appealing to people,” said Beaudoin-Schwartz. “It’s a new way to engage a younger generation of givers.”