Who can tell the saddest story about their disease and get strangers to chip in for their medical bills? This has been a big social media trend in 2015, and some disease funders and institutions are actually encouraging it.
The Rare Genomics Institute launched a pilot program called Amplify Hope, which is helping families develop and launch crowdfunding campaigns to raise funds for genetic sequencing, which costs about $7,500. Many people who seek treatment at the institute have undiagnosed illnesses and no health insurance. So the institute created a 60-page book about crowdfunding strategies as a practical guide for creating your own funding campaign to pay the costly bill for testing. The John Templeton Foundation is funding this project.
But what makes this effort different from some of the internet campaigns you’ve likely encountered on social media, Amplify Hope participants only solicit donations from friends and family members, not the general public. Some 50 to 100 people kicked off the effort, and families were randomly assigned to Indiegogo Life, YouCaring, or Crowdrise platforms. Another aspect of the pilot program will be researchers' ability to use the crowdfunding guide to measure the impact of community engagement and success rates of different social media approaches.
“Storytelling is essential to attracting donors,” said Paul Schindler, executive director of the institute. “While the institute will provide support for the campaigns, the success of each one will depend largely on the effort of the patient’s family. The more they put into it, the more they’ll get out of it.”
The institute involved here has been offering incentives to people who meet fundraising goals and get high numbers of social media shares. The simple fact that disease patients have to resort to crowdfunding to get the care they need truly says something about the society we’re living in.
So why are funders like the John Templeton Foundation supporting crowdfunding efforts for disease treatment?
While conditions like heart disease, cancer and Alzheimer’s have dozens of foundations and donors awarding research grants, some diseases are so rare that they aren’t on most funders’ radars. In this particular pilot program, the focus is on conditions that aren’t even defined by a name, and if a disease can’t be named, it’s not likely to be picked up by any donor who isn’t personally affiliated with the patient.
You can learn more about rare disease patients in need of genetic testing to identify their conditions and determine a treatment plan on the Amplify Hope website. Genetic sequencing isn’t a cure, but it might lead to identifying rare conditions and getting these needs in front of potential donors.
To learn more about this funder’s overall approach to grantmaking, check out IP’s full profile, John Templeton Foundation: Grants for Disease.