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Report: Juvenile Diabetes Cure Alliance finds lack of progress toward type 1 diabetes cure

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Philanthropy Journal staff

According to the Juvenile Diabetes Cure Alliance‘s recent State of the Cure report, only 2 percent of the funds donated to the four largest diabetes nonprofits end up in the hands of researchers working on a near-term cure for type 1 diabetes.

Type 1 diabetes is a chronic disease that directly affects up to 3 million people in the United States. According to Phil Shaw, head of the JDCA, the current generation of people with diabetes will not see a cure in their lifetime if charities maintain the status quo. The lack of proper funding for a near-term cure is in direct contrast to the wishes of most people affected by type 1. A JDCA survey conducted earlier in the year found that 9 out of 10 diabetes donors prefer that research funds support a near-term practical cure rather than a distant cure that would totally eliminate the disease.

“This growing gap between donor funding for research and tangible progress has prompted us to investigate how nonprofits handle funds,” said Shaw. “Despite an increase in dollars raised toward cure-related research in recent years, we continue to see a lack of cure progress. We believe this gap between donor wishes and fund allocation harms nonprofit credibility and needs to be addressed.”

According to a JDCA report, the JDRF, American Diabetes Association, Joslin Diabetes Research Center and Diabetes Research Institute Foundation spent $359 million on non-research activities, including overhead, fundraising, education, awareness and clinical care, in 2012. According to the State of the Cure Report, only $143 million was spent on all categories of type 1 cure research combined, and 98 percent of these funds went toward a cure 100 or more years away.

Messaging used to raise funds also illustrates a lack of alignment between donors and nonprofits. State of the Cure found that, of 550 fundraising events analyzed in 2013, 90 percent used explicit or implicit cure messaging in soliciting funds. Once Walk for a Cure, Tour de Cure and events like them have wrapped up, only 18 percent of donations are used to fund either a near- or long-term cure.

As a result, the JDCA is calling for charities and donors to align allocation of funds with donor intentions. Specifically, the independent nonprofit challenged the four major diabetes nonprofits to direct at least 25 percent of donor contributions to a near-term cure to accelerate progress and put an end to stagnant research efforts.

“Donors have such a clear idea of where their money should be going, but are surprised to learn that their funds don’t always support what they seem,” Shaw said. “Charities need to move the needle beyond meeting internal metrics. Aligning with donor wishes will create meaningful change, earn donor respect and ensure continued funding through that respect. Listening and reacting to donors is a win-win for nonprofits.”

For a full copy of the report, click here.

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