Juvenile Diabetes Cure Alliance

The Juvenile Diabetes Cure Alliance (JDCA) is a registered 501(c)(3) non-profit organization dedicated to developing a "practical cure" for type 1 diabetes. Established in 2010, the organization’s home office is in New York City and it focuses primarily on activity within the United States. The JDCA is independently funded and does not seek donor contributions. The organization advocates for increasing type 1 diabetes cure research and publishes reports on a variety of related topics, including research progress, fundraising utilization, and donor priorities.

The organization defines a practical cure as any solution that gives people living with the disease the chance to live a normal, unrestricted life.^[1]

History

The JDCA was founded in 2011 by Brian Kelly, Chairman of the Board of Activision Blizzard, after his son was diagnosed with type 1 diabetes. Kelly founded the organization to accelerate a cure for type 1 within his son’s lifetime. At the time of its founding, the JDCA adopted a business, results focused perspective in an effort to hold major diabetes non-profit fundraising organizations accountable for the absence of measurable goals to track progress and a lack of transparency to the donor public.^[2] One key theme which has remained even as the organization has evolved is that donor priorities and the utilization of funds by major fundraisers should be aligned.^[3] As of 2016, the JDCA has published over 150 reports on topics related to finding a cure for Type 1 diabetes and has led several advocacy campaigns to bring awareness of need for more cure research funding.

Activities

Activities include research, publishing, advocating for T1D donors. All activities are with the ultimate purpose of bringing about what the organization calls a Practical Cure for type one diabetes.^[4]

Research and publishing

Between 20 and 30 reports are published per year and are sent via email to an audience that is currently a little over 42,000 people. There are four main types of reports:

Human trials research progress

The JDCA tracks and categorizes type 1 diabetes research projects that are in human trials or about to start human trials. The list of projects is updated twice a year. While most projects have remained constant, some have been removed over time for insufficient test results and new ones have been added.^[5]

State of the Cure

They also publish the annual “State of the Cure for Type 1 Diabetes” report, which gives an overview of the progress toward a T1D cure over the preceding 12 months.^[6]

Utilization of funds

The organization evaluates and analyzes the income and expenses of diabetes charities and publishes reports on how the money is utilized.^[7]

Donor Sentiment

Based on survey results, the group publishes the sentiments of the T1D community, including priorities and values. One finding is that the number one priority of the community is finding a cure and most expect this will happen in the next 10 years.^[8]

Advocating for an increase in type 1 diabetes research

The JDCA advocates for a significant increase in spending on cure research for type 1 diabetes.^[9] It’s activities have fostered some discussion within the diabetes community^[10] A 2016 petition to increase cure funding acquired 42,000 signatures.^[11] The JDCA also provides services for donors who want to legally stipulate how their gifts will be used.^[12]

Criticism

The JDCA’s approach has been controversial for its focus on outcomes and expediency rather than traditional methods of deciding what projects to fund.^[13]

Critics of the JDCA have stated that the definition of a cure can vary depending on who you ask. Others argue that a cure by 2025 is unobtainable and that improved diabetes treatments are a more valid outlet for funding than the JDCA acknowledges.^[14]

References