Juvenile Diabetes Cure Alliance

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The Juvenile Diabetes Cure Alliance (JDCA) is a New York-based non-profit 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.[1] The JDCA is a privately funded research and donor advocacy organization for type 1 diabetes. They publish analysis on major diabetes charities, such as JDRF and the American Diabetes Association (ADA), report on cure research projects, and advises donors on structuring gifts to advance cure research.[2]

History[edit]

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. The JDCA is a 501(c)(3) organization fully funded by the Brian and Joelle Kelly Family Foundation. It does not solicit or accept donations.

To date, the JDCA has published over 100 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.

JDCA marketing materials note:

  • 100+ research reports published
  • 75,000 man hours spent conducting analysis of the T1D giving landscape
  • 17 surveys of T1D donor priorities over 4 years
  • Semi-annual review of T1D research projects in human trials
  • 75,000 Facebook followers
  • $25 Million dollars of donations influenced


Advocacy[edit]

The JDCA advocates for a significant increase in spending on cure research for type 1 diabetes. On September 8, 2015, the JDCA launched a petition campaign to encourage the American Diabetes Association (ADA) and JDRF to significantly increase the portion of their annual budget that is spent on cure research, from 7% to 30%.[3]

The JDCA evaluates and analyzes the finances of diabetes charities based on how publicly traded companies report their earnings and expenses. [4] This approach stems from the JDCA's philosophy that donors should be treated like shareholders.[5]The JDCA publishes reports on how much money is donated to diabetes research foundations and how the funds are used.

The JDCA also provides services for donors who want to legally stipulate how their gifts will be used,[6] providing its network of alliance members with information on how to ensure their donations are spent on practical cure research.[7] For example, in 2013 the JDCA worked with NYT best-selling author Brenda Novak who 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.[8]

Research[edit]

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.[9]

According to the JDCA, there are currently four research pathways that meet the criteria of a practical cure:

  1. A device that mimics the pancreas;
  2. Glucose responsive insulin;
  3. Immune system modification with sustainable cell supply;
  4. Islet transplantation with sustainable cell supply.

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.[10] Some organizations use inclusion in JDCA identified projects as a differentiating characteristic.[11]

Criticism[edit]

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.[12]

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.[13]


References[edit]

  1. ^ Alex O’Meara (2 July 2013). "JDCA: Curing Type 1 Diabetes by Redefining 'Cure'". A Sweet Life. 
  2. ^ "Finding a "Practical Cure" for Diabetes". Diabetic Connect. 
  3. ^ Katie Bacon (October 6, 2015). "Should JDRF and ADA Fund More Diabetes Cure Research? A Sweet Life.". 
  4. ^ John Parkinson (13 April 2012). "Follow the Donations: Accounting for the Monies Given to the Largest Research Foundations". DiabetesCare.net. Retrieved 26 June 2013. 
  5. ^ Phil Shaw (18 November 2013). "Treat donors as shareholders to develop a loyal, invested giving base". Philanthropy Journal. Retrieved 5 February 2014. 
  6. ^ Karen DeMasters (16 January 2014). "How to Make The Most Of Philanthropy". Financial Advisor. Retrieved 5 February 2014. 
  7. ^ Doug Donavan (22 September 2013). "Nonprofit Leader Pushes Idea of Tying Executive Pay to Progress in Accomplishing Mission". The Chronicle of Philanthropy. Retrieved 14 December 2013. 
  8. ^ "U.S. News Bits". Philanthropy Journal. 9 May 2013. Retrieved 5 February 2014. 
  9. ^ "CNN Orgensis Link". 
  10. ^ "State of the Cure" (PDF). JDCA.org. October 2013. Retrieved 5 February 2014. 
  11. ^ "Orgenesis Included in Juvenile Diabetes Cure Alliance 2015 Update of Emerging Practical Cure Projects". CNN Money. Retrieved 31 August 2015. 
  12. ^ Deanna Pogorelc (22 October 2013). "Research analysis finds "little tangible progress toward a cure" for type 1 diabetes". MedCityNews. 
  13. ^ Scott Strange (11 November 2011). "Hello JDCA, I'm Part of the 85". Strangely Diabetic. Retrieved 3 March 2014. 

External links[edit]