Understanding What Makes a Successful Crowdfunding Campaign

The Scientist, May 2018 Issue | By Jim Daley | May 1, 2018 : Researchers at the Rare Genomics Institute look at how families finance the cost of diagnostic exome sequencing.

It was a parent who first approached Romina Ortiz, the COO and vice president of patient advocacy at the Rare Genomics Institute (RGI), about crowdfunding. The mother of Maya Nieder, a developmentally disabled 4-year-old, was looking for a way to raise money for her daughter’s whole-exome sequencing, which reveals the intricacies of protein-coding genes (see “Answers in the Exome” here).

Ortiz had cofounded the nonprofit in 2011 to connect physicians, researchers, and rare-disease patients to laboratories that could conduct diagnostic genome sequencing, and to help scientists in those labs find funding. It wasn’t easy at first.

“We by no means were experts at raising funds, so we really wanted to see how else we could help our [patients’] families,” says Ortiz.

In 2012, the RGI managed to raise $3,550 through crowdfunding to sequence Nieder’s exome. The genetic results revealed that the child had a mutation in a single gene that researchers thought was responsible for her disorder. The finding was the first example of a crowdfunded gene discovery.

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Recruiting Now: Amplify Hope Initiative: Studying Crowdfunding for Exome Sequencing

RG is currently recruiting patients needing help with funding for exome sequencing for participation in our Amplify Hope initiative, a Templeton grant-funded study to measure the effectiveness of different methods of crowdfunding. Participants and their families will be given training on crowdfunding, and then launch a campaign for sequencing. RG has worked with our sequencing site partners to offer savings for all participants. To learn more, visit our Amplify Hope website.