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:
Their first report is here:
Their definition of a cure is here:
(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.
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Wednesday, June 1, 2011

Possible Cures for Type-1 in the News (June)

LCT Starts A Phase-II Trial in Argentina

LCT is developing an encapsulated pig islet cell product.  The hope is by implanting these cells, people with type-1 diabetes will not need to measure their BG level or inject insulin, and the cells will keep their BG levels in normal range without an external help.

LCT has gotten government permission to start a phase-II trial in Argentina.  They expect to dose 8 people in the second half of 2011.  Each person will get to implants about 3 months apart.  LCT has already run a phase-I trial in Russia, and a phase-II trial in New Zealand.  But together, those trials have treated only 20 people.  This trial will bring the number up to 28.  Previous results were that one patient was did not need external insulin for a few months, and another was insulin free for a few weeks.  Several other patients used less insulin after the implantation, for weeks or months.  From my point of view, that's a long way from a cure, but LCT has been working to improve their encapsulation technology and their islet cell processing technology, and research is always about doing better in the future.

Are Pharma Companies Paying Your Doctor?

The guys over at Pro Publica have gotten a hold of several databases of doctors who are being paid by pharmaceutical companies, for various reasons.  The companies provided this information to the government, but Pro Publica has also taken it and made an easy to search database.  See if your doctor is getting paid for speaking, or for meals, or for any other reason.  (Look up names like "Smith" and "Jones" to get a feel for how much money is involved.)  I never thought a lunch or two really mattered, but some of these guys are getting more than $35,000 in one year, and that's enough to make you wonder.  Or at least make me wonder.

Xcell (Adult Stem Cell Clinic) Shut Down in Germany

Every few months, I get asked about for-profit clinics that offer to cure various aliments (including type-1 diabetes) by injecting people with their own adult stem cells.  I'm working on a detailed posting about these clinics, but in the meantime, there is one less clinic to worry about:  Xcell, with two locations in Germany, has been shut down.

I definitely got more questions about Xcell then about similar clinics in Mexico, Argentina, Thailand, the Ukraine  China or anywhere else.  I think being located in Europe gave them an aura of respectability missing from other clinics.   Years ago, they announced that they were going to start a clinical trial on type-1 diabetes.  I searched diligently, but never found any evidence that the actually had started the study, and certainly no results.  But they always had great on-line testimonials from people with type-1 diabetes (and many other illnesses) who they had "helped".

News coverage:

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.
To Get as Email Join here: