Juvenile Diabetes Cure Alliance
The Juvenile Diabetes Cure Alliance (JDCA) is a New York-based nonprofit focused on bringing about a practical cure for type 1 diabetes. The organization defines a practical cure as any solution that gives people living with the disease the chance to live a normal, unrestricted life. The JDCA is a privately funded research and advocacy organization for type 1 diabetes donors. The independent nonprofit conducts analysis on major diabetes charities such as JDRF, writes reports on cure progress and charity spending, educates donors, and provides counsel for large donors on structuring their gifts.
The JDCA was founded in 2011 by Brian Kelly, chairman of gaming company 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. He wanted to bring best practices from the business world to drive accountability in the nonprofit research world and stimulate high-impact giving. The mission of the JDCA “is to direct donor contributions to the charitable organizations that most effectively fund research with the goal of delivering a type 1 Practical Cure by 2025.” The JDCA is a 501(c)(3) organization funded by the Brian and Joelle Kelly Family Foundation. It does not directly solicit donations.
The JDCA advocates for research spending toward a practical cure that would enable people with type 1 to live with blood sugar testing once a week or less; eat an unrestricted diet; require only a simple regimen of medication; sleep worry-free; experience only minimal diabetes side effects; and experience fast recovery from surgery. According the organization’s research, only six research projects out of more than 300 currently in human clinical trials meet that definition.
By publishing its own reports, the JDCA tracks how much money is being donated to diabetes research foundations and whether the funds are being used for cure research or other areas such as non-cure research, administrative expenses or public education. The JDCA evaluates and analyzes the finances of diabetes charities based on how publicly traded companies report their earnings and expenses, which stems from its philosophy that donors should be treated like shareholders. The JDCA also provides services for donors who want to legally stipulate how their gifts will be used, providing its network of alliance members with information on how to ensure their donations are spent only on practical cure research. In 2013, author Brenda Novak donated all the proceeds from the ninth annual “Brenda Novak for the Cure of Diabetes” online auction to practical cure research at the Diabetes Research Institute.
The JDCA issues regular reports on diabetes charities and research organizations. Its major annual report, “State of the Cure,” analyzes the donation revenue and spending of diabetes charities, including JDRF, American Diabetes Association, Joslin Diabetes Center and Diabetes Research Institute Foundation. The 2013 report found that only 2 percent of the funds donated to those organizations is spent on research that would deliver a cure for type 1 diabetes by 2025.
According to the JDCA, there are currently four pathways that meet the definition of a Practical Cure: islet transplantation; drugs that would stop autoimmune attack and enable cells to regenerate; devices that would reliably replace the function of the pancreas; and cell retraining therapies. Within those categories, there are six projects in human clinical trials that could deliver a cure by 2025:
- Living Cell Technologies’ DIABECELL
- Tianhe Stem Cell Biotechnologies’ Stem Cell Educator Therapy
- Faustman Lab at Mass General’s BCG Vaccine
- ViaCyte’s stem cell therapy
- Sanford Research’s combination therapy
- Cliniques Universitaires Saint-Luc Monolayer Cellular Device
Additionally, the JDCA tracks projects in animal and late-stage preclinical testing. The JDCA does not believe that diabetes foundations should abandon research projects that target complications, glucose control and prevention. Rather, the organization suggests that 25 percent of donations should support practical cure research initiatives.
The JDCA’s approach has been criticized as controversial for its focus on outcomes and expediency rather than traditional methods of deciding what projects to fund.
Critics of the JDCA have stated that the definition of a cure can vary, a cure by 2025 is unobtainable and that treatment is an equally valid outlet for funding.
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