Monday, June 20, 2011

Introduction to the The Juvenile Diabetes Cure Alliance

At the bottom of my posts is the phrase "nothing here is official JDRF or JDCA news, views, policies or opinions".  Everyone knows what the JDRF is, but I do occasionally get asked what JDCA is.   In the past JDCA was in "start up, stealth mode" meaning they were deliberately staying out of view.  But they are now taking a more public stance, so I thought I'd say a few words about them:

Introduction to the JDCA: The Juvenile Diabetes Cure Alliance

JDCA is a relatively new organization, which I think is unique in the world of type-1 diabetes charities (and maybe unique in all of philanthropy).  I think of it as a hybrid of Consumer Reports and a Lobbying Organization, but focused on type-1 charities.  The Consumer Reports part of their goal is to shine a light into what various type-1 charities are spending money on.  The Lobbying part of their goal is to focus more of that money into projects directly aimed a curing type-1 diabetes in the next 15 years.  They want to lobby the charities to focus on this goal, and also help doners channel their money into this goal. 

Their tag line is "The Voice Of The Donor for a Cure" and their mission is to "direct donor contributions to the research opportunities that provide the best chance of curing Type 1 diabetes by 2025".

Obviously there are some strong synergies between what they want, and what I research.  We are both focused on the cure end of the process.  I look at human trials, which gives me a 10 year view.  They are looking at a slightly longer 15 year view.  But even 15 years is not very long in the world of research.

Culturally, they have a strong business / financial ethic.  The founder and the senior guys he's hired have business backgrounds.  They use the terminology, methodology, and mind set of business analysis.  It is my understanding that the key movers in the organization are parents of children with type-1 diabetes (at least right now).

They also feel that measurable progress and deadlines for results are critical to ensuring that funded research will lead to a cure, quickly.

As far as I know they don't accept donations for themselves, rather they are funded by one wealthy family which is recently effected by type-1 diabetes, and which thinks that this project is the most productive work they can do to cure type-1 diabetes.

Their web site is here: www.thejdca.com
Their first report is here: http://www.thejdca.org/uploads/JDCA_initial_report_2011.pdf
Their definition of a cure is here: http://www.thejdca.org/uploads/Defining_a_Practical_Cure.pdf
(Their "practical" cure is very similar to my "functional" cure.)

Non-conflict of interest statement: I don't work for the JDCA nor am I a member.  They've never paid me or given me any kind of gift or freebie.  They do read my blog and use the research they find there.  We discuss specific issues that they care about and they sometimes ask my opinions on research into cures.  Some of the information and opinions we discuss have not yet made their way into my blog.

Joshua Levy
All the views expressed here are those of Joshua Levy, and nothing here is official JDRF or JDCA news, views, policies or opinions.
Blog: http://cureresearch4type1diabetes.blogspot.com
To Get as Email Join here: http://groups.google.com/group/type-1-diabetes-clinical-trials-news

2 comments:

Charlotte Rossmann said...

Joshua,
What do you think of this research? http://news.harvard.edu/gazette/story/2011/06/new-hope-against-diabetes/
I'm interested in your take on it.
Thank you,
Charlotte

Michele said...

Dear,
I have a litle girls she is 5 yrs type 1 diabetes. I realy liked your blog. We are from Brasil Sao Paulo. This is about LCT they are already comercialyse Diabecell in Russia, but I cant comunicate with them. My cousin lives in New Zeland even him can't COMUNICATE with them. I read on their website that the insulin produced by this encapsulation is not enough to make a better life. Is too litle. What a pitty, or maybe Im am wrong! I have a dream about Dr Faustman, she is gonna get there. Ill give a vacine to my child gets cured!
Best Regards
Michele