Robert Stone was a healthy baby until he was 13 months old. Then, over 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.
The tests have remained mostly inconclusive for the past 13 years. The next step for the Stone family is to pay 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. I think it's an interesting idea, and [my husband and I] are both willing to give it a shot."
Several similar websites, such as Kickstarter.com IndieGogo.com CrowdRise.com and Razoo.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.
The sites encourage people to tap their online social networks to promote their own campaigns, or those they care passionately about. Rare Genomics is one of two nonprofit startups launched in Baltimore in the past few months that use crowd-funding to benefit medical research and philanthropic projects or individuals. The other is GiveCorps.com, a site where local nonprofits can run brief campaigns to raise money for specific projects.
"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.
"You can be someone who cares about helping someone else," said Lam. "Even if you give $10, that's a good step. And if you can recruit other people and help fundraise, that's even better."
Jimmy Lin, the founder of the Rare Genomics Institute and a 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. Lin launched RareGenomics.org last month.
Lin and a team of research volunteers he assembled hunt for so-called "mystery genes" that could explain a patient's undiagnosed ailment.
"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 who has been studying in Baltimore the past 10 years. "There's a funding problem, and because of the funding problem, there's a lack of researchers studying these diseases."
"We not only help with the funding," added Lin; "we provide links to researchers and physicians."
So far, the site features three children, including Robert Stone, whose campaign has $230 of the needed $7,500. The Stones were introduced to Lin through another mother whose child has an undiagnosed condition.
Lin hopes to attract more families, help them raise money and link them with a team of volunteer researchers that he's organized to work on their genome sequencing and testing.
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. The National Institutes of Health recently launched the Undiagnosed Diseases Program and invited people with such conditions to be tested and studied.
The NIH program drew so many applicants that the organizers had to suspend the application process in July to give themselves time to sift through hundreds of applications. The program has spots for 500 patients, but more than 1,700 people applied.
Advocates say it's not clear how many people suffer from unknown ailments because the terminology varies and there is no central data-gathering effort. Amy Clugston, founder of Syndromes Without A Name, a national nonprofit and support group for families, said that Lin's effort provides a much-needed resource for families.
For many families, sequencing a child's genome may be the latest and final step they can take to feel that they're pursuing answers to a mysterious medical condition, she said.
"Sometimes, families don't even realize the technology is there," said Clugston, who has a 15-year-old daughter with an undiagnosed disease. "They feel a sense of peace if they've gone the extra mile to try to find out what is affecting their child."
While Rare Genomics focuses on crowd-funding within an often-overlooked niche, GiveCorps.com is trying to develop an online pipeline of donors who are interested in giving locally. In July, Jamie McDonald, a former investment banker at Deutsche Banc Alex. Brown, and business partner Beth Falcone launched GiveCorps.com.
The site has a twist: GiveCorps.com gives potential donors a gallery of local projects to which to donate, plus coupons to local businesses, including restaurants such as Woodberry Kitchen and B&O American Brasserie. In three months, GiveCorps has funneled more than $27,000 in donations to local nonprofits.
"We make it easy for donors to find something right in their backyard," said McDonald.
GiveCorps plans to expand to other cities, such as Philadelphia, early next year, McDonald said.
GiveCorps has a hybrid nonprofit/for-profit structure, said McDonald. The for-profit segment helps market the nonprofits to the community, while McDonald also set up a nonprofit foundation that accepts the donations. GiveCorps keeps 7 percent of the money it raises for each nonprofit's project.
So far, donations average around $36 per donor. Some of the nonprofits raising money through GiveCorps include the United Way of Central Maryland, Moveable Feast, Maryland SPCA and the Enoch Pratt Free Library. GiveCorps works with the nonprofits to craft a project-based campaign for donors to fund, an approach that's more focused than a general giving plea.
McDonald said GiveCorps is trying to attract youthful millennial generation donors, who may not have the deepest pockets but are active in seeking ways to engage in good works through the Internet.
Lindsley Stys, marketing director at the United Way of Central Maryland, said the organization's GiveCorps project will help raise $25,000 for its Harvest of Plenty campaign to provide Thanksgiving meals for 2,500 families. The United Way is also tapping donations from companies and foundations for the effort, but using crowd-funding sites will be a part of its future, Stys said.
"It's definitely something we're embracing," said Stys. "We want to make it as simple and convenient as possible for people to give."
Gabe Cohee, program director at the Boys Opportunity and Resource Network, ran a GiveCorps campaign in September to raise $1,500 to buy four new laptops for his nonprofit, which helps about 40 boys in East Baltimore. "We found it to be really successful," Cohee said, adding that it raised more than $1,600.
The Boys Opportunity and Resource Network, which is in its third year, still relies mostly on individual donations and foundation grants. Cohee expects that a crowd-funding site will be part of his strategy in the future to raise funds for specific projects. But the bulk of the organization's funding will continue to come from other sources, he said.
Raising funds through individual giving is still important for most nonprofits, said Buffy Beaudoin-Schwartz, spokeswoman for Association of Baltimore Area Grantmakers, which represents foundations and corporate giving programs.
"I think the notion of collaborative giving is something that is appealing to people," said Beaudoin-Schwartz. "Some of these online giving opportunities have an appeal to people who want to pool their dollars for a particular issue. It's a new way to engage a younger generation of givers."
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