Apparently I am not the only person who is fed up with JDRF and other charitable organizations ■■■■■■■ away over a billion dollars with no tangible results. Enter the JDCA: the Juvenile Diabetes Cure Alliance.
The JDCA is building on the content of Joshua Levy’s fabulous blog and creating a formal not-for-profit organization that will track the current state of research for a cure for Type 1 diabetes. This group was founded by parents of children with Type 1. According to the JDCA website, “We aim to become the recognized leader in providing objective and independent research on the Type 1 landscape and will conduct ongoing analysis of several major Type 1 research organizations. Future reports will analyze the individual charities, progress toward a cure, and related Type 1 issues.”
JDCA will not be a fundraising organization, but they intend to advise big donor$ on how to allocate their money to the research opportunities that provide the best chance of curing Type 1 by 2025.
I love this idea! The JDCA’s website needs work, and I would like to see them promote their mission more aggressively, like The Gateway for Cancer Research’s tagline: “Demand Cures Today”. Right now, JDCA’s tagline is: “The Voice of the Donor for a Cure”. Ugh.
As an Old Schooler, I’ve had enough of JDRF after hearing their fundraising spiels for 35+ years with no results to show for it. I’m impatient. I’m disgusted at the wasted funds. And I’m thankful that a group of like-minded parents are creating a business approach to curing Type 1.
If JDCA gets us to a cure or closer to a cure for Type 1 diabetes, I am all for it. However, I believe it is short-sighted to be promoting a cure as JDCA defines it, and not include technological advances, which frankly have been FAR more significant than any progress towards an actual cure (rather than a “cure by improved technology”). I also find it annoying that JDCA puts “juvenile diabetes” in it’s moniker, when the majority of new-onset Type 1 diabetes is and always has been seen in those over age 20 (see latest stats from Diabetes in America from the CDC). Finally, JDCA falls into the same trap as JDRF and ADA–actually minimizing the true number of people with Type 1 diabetes. It is the norm rather than the exception for an adult with new-onset Type 1 autoimmune diabetes to be misdiagnosed as having Type 2 diabetes, an altogether different disease as JDCA notes. Type 2 diabetes is not 10 times more common than Type 1a diabetes. The advent of antibody testing (Glutamic acid decarboxylase antibodies (GADA), islet cell antibodies (ICA), and insulinoma-associated (IA-2) autoantibodies) more than 20 years ago demonstrated that most Type 1 diabetes is autoimmune in nature. Another interesting outcome of the discovery of these antibodies was the finding that about 10% of people who had been diagnosed with “Type 2” diabetes were antibody positive, were misdiagnosed, and in fact had Type 1 autoimmune diabetes (sometimes called latent autoimmune diabetes in adults, or LADA). Although this population has Type 1 diabetes, and its presence is increasingly acknowledged, this population of Type 1 diabetics is still included in the statistics and information on Type 2 diabetes (a fundamentally different disease not only clinically but genetically). If people with slow-onset Type 1 diabetes are removed from the Type 2 diabetes statistics and correctly included in the statistics for Type 1 diabetes, Type 2 diabetes represents about 75-85% of all diabetes and Type 1 represents about 15-25%. According to John Walsh, author of “Pumping Insulin”, rapid onset Type 1 diabetes is about 5-10% and slow onset Type 1 is 10-15% of the total diabetic population. So there are WAY more than 1 million people with Type 1 diabetes in the U.S. JDCA should get up-to-date on stats, but certainly it is a worthy cause and worthy pursuit.