Posted by Sandra Silvestri on June 09, 1999 at 02:20:49:
In Reply to: Re: JDF I Still Want Answers posted by Mary E. on June 07, 1999 at 16:39:40:
Mary:
I have been away from my computer for a few days.
Just FYI,
Most of JDF volunteers pay their own way to conference, lay review, scientific workshops, etc. But what is not paid for by the volunteers, is often donated by businesses. For example, Delta airlines, Northwest airlines have given miles for airline tickets, Marriott Hotels gives us a good rate on roooms, meals, etc. The Children's Congress is being funded by an outside grant from an advocacy group. JDF is very good at finding sources to help us not spend our research dollars on anything other than research. But it is not wise to have money be the thing that keeps a person from volunteering or contributing. Not every one can afford to pay their own way and therefore JDF will try to accomodate expenses for science review and conferences to those who volunteer but cannot afford to pay their own way.
Some of your information is dated. DIRPS is an old term . We do not fund DIRPs anymore. I am too tired tonight to define how JDF funds. Please see the web site at jdf.org (note the new address) for funding info. But I am happy to answer what I can and refer you to someone else if I cannot answer your questions.
Some of your criticisms were felt by the board a few years ago. Steps were taken to remedy issues of time, funding caps, creative research decisions,etc. You are right that making noise at JDF (or anywhere else) is necessary for change to come about. A lot of noise was made but a lot of good, quiet study and work went into the changes that have begun to take place at JDF. I say "begun" because the task force is still being implemented and updated as we speak.
I recognize some of your language. I have heard it before from other "searchers" for the cure. One in particular stands out in my mind. He is a wonderful father who,like you and I, wants a cure for his child. He vocally criticized JDF and finally left to work elsewhere. I ran into him at a JDF sponsored workshop awhile back.(He was invited and attended. You do not get ostracized if you vocally criticize. I do it all the time and I am still kicking. Al Gordon was very vocal in his criticism of JDF but he was invited to the islet workshop and I have even nominated him to lay review. ) He(the father) told me privately that he had made a mistake. And advised me not to lose my cool, jump to conclusions or leave JDF but rather to work within JDF to affect change. I listened with my heart open and followed his advice. I silently thank him every day. He was right. We don't need another funding organization. There is already enough confusion with the ADA and the JDF. The JDF mission statment meets MY needs and the needs of my child.
There is something else about your messages that I don't quite understand. Have you seen DRI's web site? Camillo and Norma Sue both cite JDF as funding sources for their work. I personally have sat on review sessions where their work was funded along with many other excellent grants at the DRI. Ricordis work is based on Paul Lacey's work that was originally funded by JDF. JDF has been in the business of cure research for 29 years. Chris Newgard said on Saturday that JDF has been there for him since his early days as post doc. We don't have a cure yet, it is true. But this is not the same thing as having never participated in the effort. JDF has laid many stones in the path to the cure.
Finally, I wish I understood your rage. I feel enormous rage for diabetes. I just have never felt it for any person (in or out of a foundation ) who makes an effort for diabetes cure research. I have had some pretty bloody battles from differences of opinion as to how monies should be spent, etc. but have never lost sight of who the real enemy is. I do not wish to stick my head out for you to bite off but I am interested in you and how you got so angry at JDF. You can privately email me if you like at sanmom_AT_aol.com. I will keep your correspondance confidential.
I apologize for typos etc. I am whippped from my cross country travels. But ever so greatful for the kids of the Children's Congress who I am meeting and who are stealing my heart with their passion and enthusiasm.
Sandra