JDCA Survey: Diabetes Donors Want More Funds to Support Cure Research

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Results illustrate contrast between donor wishes and how the major charities use funds, with less than 20 percent of donations directly supporting a cure.

A new Juvenile Diabetes Cure Alliance survey indicates that the majority of people with type 1 diabetes and their loved ones want their charitable donations to go toward cure research – a finding that stands in contrast to the actual spending of the major diabetes nonprofits.

While 53 percent of people who have donated to a diabetes charity in the past year want their donations to be used for a cure, a new JDCA report shows that only 18 percent of $380 million in donor contributions were used to fund cure research last year. And only 2 percent went toward research projects that have the potential to deliver a near-term practical cure.

More than 200 people were surveyed; all of whom either have type 1 diabetes or a close family member or friend with the condition.

Beyond the expected administrative expenses, donor contributions are used by diabetes charities to fund research into complications and treatments, awareness efforts and education. The survey found that 76 percent of donors believe that a portion of their gift supported cure research. Despite this disconnect, nearly three-quarters of donors are confident that non-profits are using their donation effectively.

“Our goal is to keep the diabetes charity industry on track to deliver a cure in the near term,” said Phil Shaw, general manager of the JDCA. “These results show that there are large strides to be made in both donor education and ensuring that charities are mindful of and responding to donor wishes. The JDCA is both a watchdog on cure progress and dedicated to bringing about change with each individual donation.”

The survey also indicates that donors want options when it comes to communicating with charities and having control over their donations. If the option were made available to them, 93 percent of respondents indicated that they would support a near-term practical cure. While the JDCA works with more than 5,000 donors to legally stipulate that funds support a practical cure, the organization also maintains that charities should educate donors about what their funds will support and treat donors like shareholders who deserve updates and regular progress.

“The four major diabetes charities derive 75 percent of their operating expenses from contributions,” said Brian Kelly, founder of the JDCA and parent to a child with type 1. “When community events across the country invoke a cure to encourage donations, donors deserve no less than to know where their money is going. By working with an organization like the JDCA that takes the guesswork out of giving, those with diabetes and their loved ones can ensure it’s for a cure.”

Beyond guiding donations, the independent nonprofit also issues regular research reports on the state of the diabetes charity industry. While 69 percent respondents said they think a cure will be developed in the next 10 years and 94 percent want a cure within the next decade, JDCA research shows that only six projects out of more than 300 have the potential to deliver a cure by 2025. Because less than a quarter of every dollar goes toward cure research, the JDCA believes a shift in funding priorities is necessary.

The JDCA frequently surveys the type 1 population to ensure that the activities of diabetes nonprofits align with donor wishes. Other survey findings include:

  •     Ninety-four percent of people with type 1 and their loved ones have donated to a diabetes charity in the past year; 93 percent said they plan to donate or may donate in the next 12 months.
  •     Thirty-nine percent of respondents believe a cure will be achieved within 10 years; 30 percent believe that breakthrough is as little as five years away.
  •     Eighty-five percent of respondents indicated that they would prefer a practical cure over an idealized cure. A practical cure would not completely eliminate type 1, but would allow people with type 1 to check blood sugar weekly rather than four times a day and live without worrying about low blood sugar.

The JDCA surveyed a total of 212 individuals who have type 1 diabetes or a family member or friend with the condition. The survey includes a 90 percent confidence interval and seven-point margin of error. Results pertaining to donor expectations are outlined in the recently released report “What Do Donors Expect from the Major Type 1 Non‐Profits?”

About the JDCA
The JDCA is an independent analyst of the type 1 diabetes charitable universe and brings a business-like perspective to help donors focus research toward a practical cure. The mission of the JDCA is to achieve a type 1 practical cure before 2025 by steering donor contributions to the most effective charities.

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Sarah Dietze
Walker Sands Communications
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