Juvenile Diabetes Cure Alliance
 | |
| Company type | 501(c)(3) Nonprofit Organization |
|---|---|
| Founded | in 2010 in New York City, New York, U.S. |
| Founder |
|
Area served | North America |
| Website | thejdca |
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. 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. Established in 2010, the organization’s home office is in New York City and it focuses primarily on activity within the United States.
Activities include research, publishing, and advocating for T1D donors. All activities serve the nonprofit's ultimate purpose of bringing about what the organization calls a "Practical Cure" for type 1 diabetes.[1]
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 clinical requirements of a Practical Cure are defined by those living with T1D who understand the daily burden. Practical Cure requirements include testing blood sugars once a week or less, eating an unrestricted diet, a greatly reduced and simple regimen of medication, sleeping worry-free, experiencing minimal to no diabetes side effects, and experiencing fast recovery from surgeries.[2]
History
[edit]The JDCA was founded in 2010 by Brian Kelly, Chairman of the Board of Activision Blizzard, after his son was diagnosed with type 1 diabetes at the age of two. 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 fundraising nonprofit organizations accountable for the absence of measurable progress tracking and a lack of transparency to the donor public.[3] One key theme maintained as the organization has evolved is that donor priorities and the utilization of funds by major fundraisers should be aligned.[4]
As of 2022, the JDCA has published over 300 reports on topics related to finding a cure for Type 1 Diabetes. These reports include updates to existing human clinical trials with the potential to become Practical Cures, financial analysis of the top non-profit organizations, breaking news in T1D research, and others.
Research and publishing
[edit]Between 20 and 40 reports are published per year on the Juvenile Diabetes Cure Alliance Website and sent via email to an audience that is currently a little over 200,000 people. There are four main types of reports: Human Trials Research, State of the Cure, Utilization of Funds, and Donor Sentiment.
Human trials research progress
[edit]The JDCA tracks and categorizes type 1 diabetes potential Practical Cure 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
[edit]"State of the Cure for Type 1 Diabetes" provides an annual overview of progress toward a T1D cure throughout the year.[6] The State of the Cure reflects on the challenges, advancements, and steps needed to move forward with finding a Practical Cure.
Utilization of funds
[edit]The organization evaluates and analyzes the income and expenses of diabetes charities and publishes reports on how funds are utilized.[7]
For example, although both the JDRF and ADA raised about $200 million in 2019, only 37 cents of each dollar raised by the JDRF was attributed to research and the ADA spent less than 10 cents of every dollar on T1D research.[8]
The organization also believes that executive pay at non-profits like the JDRF and ADA should be primarily incentive-based; tied to both organizational advancements and tangible progress toward a T1D cure and treatment.[8] The JDCA also advocates for a donor Say on Pay model, in which donors would have a say in executive compensation, promoting accountability to non-profit employees.
At the highest-performing for-profit companies, top executives’ annual compensation is often directly correlated to performance. The better the company does, the more executives are rewarded. This form of incentive creates a powerful professional and personal zeal to drive the company toward palpable results that benefit stakeholders and shareholders alike. Unfortunately, this business model does not usually carry over to nonprofit organizations. The JDCA believes this is a missed opportunity to drive passion, accentuate focus, and improve overall performance toward achieving organizational goals.
Donor sentiment
[edit]Based on survey results, the JDCA publishes multiple annual reports that detail the sentiments of the T1D community, specifically regarding priorities and values. A consistent finding is that the number one priority of the T1D donor community is developing a cure for type 1 diabetes. According to annual community surveys, 97% of T1D donors say that the number one reason they donate is to fund cure research.[8]
Advocating for an increase in type 1 diabetes research
[edit]The JDCA advocates for a significant increase in spending on cure research for type 1 diabetes through annual petitions.[9] Its activities have fostered some discussion within the diabetes community.[10] The 2023 9th Annual More for a T1D Cure petition to increase cure funding acquired 388,000 signatures.[11]
The JDCA also provides services for donors who want to legally stipulate how their gifts will be used.[12][13]
Criticism
[edit]The JDCA’s approach has been controversial for its focus on outcomes and expediency rather than traditional methods of deciding what projects to fund.[14]
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 2035 is unobtainable and that improved diabetes treatments are a more valid outlet for funding than the JDCA acknowledges.[15]
References
[edit]- ^ Connect, Diabetic. "Finding a "Practical Cure" for Diabetes". diabeticconnect.
- ^ O’Meara, Alex (July 2, 2013). "A Sweet Life".
- ^ Donovan, Doug (September 22, 2013). "Nonprofit Leader Pushes Idea of Tying Executive Pay to Progress in Accomplishing Mission. The Chronicle of Philanthropy".
- ^ Grayce West, Melanie (June 12, 2013). "Aligning Donors To Fight Diabetes". The Wall Street Journal.
- ^ Connect, Diabetic (August 31, 2015). "Orgenesis Included in Juvenile Diabetes Cure Alliance 2015 Update of Emerging Practical Cure Projects". Yahoo Finance.
- ^ "STATE OF THE CURE". thejdca. November 2022.
- ^ Parkinson, John (April 13, 2012). "Follow the Donations: Accounting for the Monies Given to the Largest Research Foundations". diabetescare.
- ^ a b c "Many Problems with Diabetes Cure Research, Says JDCA". 22 March 2018.
- ^ Health, Diabetes (September 7, 2016). "Type 1 Diabetes Community Fights for a Major Increase in Cure Research. NBC News".
- ^ Bacon, Katie (October 6, 2015). "Should JDRF and ADA Fund More Diabetes Cure Research?".
- ^ Woodfield, Jack (September 6, 2018). "Juvenile Diabetes Cure Alliance petition demands an increase in T1D Cure Research Funding".
- ^ Demasters, Karen (January 16, 2014). "How To Make The Most Of Philanthropy".
- ^ "Stipulation Card".
- ^ Pogorelc, Deanna (October 22, 2013). "Research analysis finds "little tangible progress toward a cure" for type 1 diabetes".
- ^ Strange, Scott (November 11, 2011). "Hello JDCA, I'm Part Of The 85".