Happy Monday!! Today’s post comes from our weekly blog discussion at T1 Diabetes Cure- Global Headquarters.
Over the past two weeks, we have revisited some of our core beliefs and findings. The JDCA published its Initiation Report in May of 2011, so we felt that it was a suitable time to reflect and remind ourselves and the community of our mission.
A question I received last week was, “But why do you think there is a need for more Practical Cure research?” This question underlies our foundation and purpose, which 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.
There is a need for more Practical Cure research because:
1) There are a lack of projects currently in human clinical trials targeting a Practical Cure
2) Cure research is not a priority and allocations to cure research have declined over the past four years
3) Many donors contribute for the purpose of a cure and many, if not most, of the fundraising activities of the diabetes non-profits solicit donations based on the message of a cure
As of January 2012, only 5 projects in human clinical trials were working toward an outcome that could achieve a Practical Cure. Given the complexity of type 1 diabetes and the difficulties of research, the only way to accelerate the development of a Practical Cure is to increase the number of projects working to deliver that outcome. This is why a defined and specific cure definition is so important. A definition will swerve as a guide to focus projects toward a practical solution that can help people now living with the disease lead a cure-like lifestyle.
Why are there currently only 5 projects, out of over 330 that are investigating type 1 diabetes in human clinical trials, working toward a Practical Cure? We estimate that only 20% of aggregate donor contributions to three of the four major type 1 non-profits was directed to type 1 cure research grants in 2011 (it is important to note that this is an aggregate statistic and the percentage varied considerably from charity to charity). Because none of the organizations possess a cure definition, we believe that Practical Cure research grants are even smaller.
Thus, large percentages of donor contributions to some of the four major type 1 charitable organizations are directed to activities that have no potential to deliver a cure for individuals living with established type 1. Moreover, from 2008 to 2011, annual funding to type 1 cure research grants by the four major diabetes nonprofits declined by 44%.
What makes these declining statistics even more disconcerting is that a majority of the fundraisers and donation campaigns use a cure message to solicit donations.
What can you do if you want to contribute specifically for a type 1 diabetes Practical Cure? Attach a stipulation to ensure that your donation is used solely toward projects that are working to deliver a Practical Cure. The JDCA provides a Donor Action Letter with this stipulation on our website (http://www.thejdca.org/wp-content/uploads/2011/12/Donor-Action-Letter.pdf).
For more analysis and discussion of research referred to in this post, please take some time to review the following JDCA research reports: “Type 1 Clinical Trials That Target a Practical Cure”, “Review of Expense Categories of the Major Type 1 Non-Profits”, and “The Disconnect Between the Cure Message Used to Solicit Donations and the Allocation of Those Donations”.
If you have any questions or cure discussions, please engage us here on Facebook, our blog (http://jdca2025.wordpress.com/) or email us at info@thejdca.org
– Cara
