JDRF letter, please read!

[easytr5]

Here is a copy of the letter I sent to JDRF this evening. Please write and encourage them to fund Denise Faustman!

God Bless you,
Melissa

Dear Sir,

I would like to know why JDRF does not support Denise Faustman's research. She
is in Phase 1 Human Clinical Trials testing one of two drugs that cured NOD
mice. At the Columbia Walk today I spoke to a volunteer at one of the booths
and she said JDRF does not support any research that could actually lead to a
cure. My oldest daughter was diagnosed in July 08 and her little sister was
pounding the pavement to get donations for this walk and just knowing her sister
would not have to suffer anymore, a cure was on the way. I was very discouraged
to hear this volunteer's opinion and I would like concrete reasons why research
to find a CURE is not being funded. These little children do not want another
gadget to manage this disease! I will be feverishly spreading the word to all
parents and friends through the internet to investigate how donated funds are
being spent! It is common sense at this point that there is no reason to replace
or regenerate beta cells if T cells are not controlled or destroyed. I do not
believe spending millions and billions of dollars, and spitting on the hopes of
little children by funding many different approaches to managing diabetes is
wise. Being a jack of all trades and a master of none IS NOT THE ANSWER! A
CURE. THAT is the goal. We don't need alternative testing and insulin delivery
systems. We need to know our little girls and boys will be alive in the morning
WITHOUT insulin. We know all too well that insulin is the only thing keeping
them alive.

Please consider funding researchers actively pursuing a cure, such as Denise
Faustman.

Melissa Lovelady

[Aine Maire]

I wrote to the JDRF some weeks ago and this was their reply...

Dear Aine Maire,

Thank you for contacting the Juvenile Diabetes Research Foundation International (JDRF). We’re glad you find the research information posted on the JDRF web site to be helpful. We also appreciate your inquiry regarding the research of Dr. Faustman and her colleagues at Massachusetts General Hospital involving beta cell regeneration and autoimmune regulation.

Beta cell regeneration and autoimmune regulation are two of the major strategic areas of research focus for JDRF -- areas in which we believe we can make significant progress towards developing cure therapeutics in the coming years. Over the past few years, we have funded a significant number of scientific investigations in these areas. In fact, since 1997, JDRF has provided over $500,000 of research support to Dr. Faustman and her colleagues at Massachusetts General, including support of work that contributed to her published findings.

While JDRF has not provided funding for the trials Dr. Faustman is currently conducting, she has been able to procure funding for her research studies from other sources, allowing JDRF to use its funds to support other projects involving beta cell regeneration and autoimmune regulation that may eventually contribute to a cure.

While we’re not funding Dr. Faustman specifically, JDRF has made a large investment in autoimmunity and regeneration research. In FY2007, JDRF provided a combined $53 million to fund research in these areas. A clear indication that we are having an impact is the recent growth in the number of compounds and products that already are in human trials. Right now JDRF has 20+ clinical trials in progress that are testing ways to block the autoimmune attack.

I hope you find this information helpful, and please let me know if I can answer any more questions.

[danismom79]

Valiant effort, but I think it will always fall on deaf ears. I won't go into why I believe so here.

[madde]

Why isn't the JDRF backing Faustmans' research 100%. It really makes no sense to me. I think we should demand a REAL ANSWER as to why. Do they know something about her research that the general public doesn't know?

If her research is progressing nicely, then there is no reason why the JDRF shouldn't fund her. If they can't give us a reasonable answer to that simple question, then I am left to believe they are not interested in finding a cure.

[DadCares]

I keep a spreadsheet of various research efforts. Although my notes could be wrong, I'm showing that JDRF funded some follow-on research related to the BCG drug. I believe they funded the University of Chicago through Dr. Anita Chong and Dr. Louis H. Philipson (but again, my notes could be incomplete). This was a follow-up to build on Dr. Faustman's research.

The study confirmed that mice were truly cured, but the percentage cured was lower in the follow-up study. They did not conclude the spleen cells as the source of the cure. Here were my notes:

03/06 - JDRF funded research to continue the work of Denise Faustman (from the Lee Iacocco study); Published 3/24/06 in Science Magazine; “injecting diabetic mice with Freund's Complete Adjuvant, a mixture of water, oil and parts of dead tuberculosis bacteria. It overstimulates the immune system cells that are attacking the pancreas, making those white blood cells self-destruct, effectively stopping the attack and allowing the pancreas to cure itself.” One third of mice cured. Could not confirm another of Dr. Faustman's findings, published in Science in 2003. There, she reported that the new insulin-secreting cells came from the spleen.

[danismom79]

I keep a spreadsheet of various research efforts. Although my notes could be wrong, I'm showing that JDRF funded some follow-on research related to the BCG drug. I believe they funded the University of Chicago through Dr. Anita Chong and Dr. Louis H. Philipson (but again, my notes could be incomplete). This was a follow-up to build on Dr. Faustman's research.

The study confirmed that mice were truly cured, but the percentage cured was lower in the follow-up study. They did not conclude the spleen cells as the source of the cure. Here were my notes:

03/06 - JDRF funded research to continue the work of Denise Faustman (from the Lee Iacocco study); Published 3/24/06 in Science Magazine; “injecting diabetic mice with Freund's Complete Adjuvant, a mixture of water, oil and parts of dead tuberculosis bacteria. It overstimulates the immune system cells that are attacking the pancreas, making those white blood cells self-destruct, effectively stopping the attack and allowing the pancreas to cure itself.” One third of mice cured. Could not confirm another of Dr. Faustman's findings, published in Science in 2003. There, she reported that the new insulin-secreting cells came from the spleen.

They funded 3 teams, I believe, to replicate her work, not build on it. Personally, I don't give a s**t where the cells regenerated from, the point is that it worked.

Another point is that BCG is a generic drug, and will not generate royalties or other huge profits for pharma companies, or the organizations who (won't) fund the trials - if it works.

I guess I reneged on my earlier comment...

[DadCares]

Agreed. That was my take away as well. I didn't care whether spleen cells were the source. The fact that a percentage of mice had been cured in 3 different studies reinforced the fact that Faustman was truly having success in her tests and deserve more follow-up. I wasn't sure if JDRF was involved in all 3 studies.