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8 Responses

  1. Scott S
    Scott S September 22, 2011 at 7:02 am | | Reply

    I think JDCA serves an important role for the diabetes community by keeping our nonprofit organizations honest. However, the notion that the so-called “artificial pancreas” can be viewed as a cure is deeply flawed because its costly technology which is likely to remain out-of-reach for large segments of the population, even assuming that the U.S. healthcare law remains in place because today, an estimated 40% of all healthcare plans offered are high-deductible (meaning $2,000 or more PER PERSON on the plan), hence this is costly technology yet the developers are behaving as if “money is no object” for a vast majority of patients, and that individuals will accept wearing all this crap on their bodies 24/7/365 in the name of glycemic control. If this is a realistic “cure”, I for one would rather my donations be invested in autoimmunity treatments for type 1 diabetes because these could potentially benefit not only individuals with type 1 diabetes, but also 80+ other autoimmune diseases.

  2. NYC1219
    NYC1219 September 22, 2011 at 10:59 am | | Reply

    I think it’s wonderful that the JDCA is stepping up to provide the diabetes community with information that is beneficial in not only helping PWD’s and their families make decisions on which organizations to support but can also hopefully push the organizations themselves forward in using donor money more effectively and putting the money where scientists, patients, members of the DOC, and multiple others who are influential and critical private donors to these projects can invest in where they feel they get the best “bang for their buck”. Galas, fundraisers, and some overpriced ticket events raise much less than one may think because of the underlying cost. In an ideal world the JDCA can help push the groups working towards a cure by forcing them to push forward and make changes based on the voice of the donor and statistics on paper. I think it is very hard to criticize a group that does not take donations, is privately funded by a single parent of a child with type 1, and is simply trying to examine, without “choosing” just one group, how money can best be spent to foremost find a cure for diabetes and also develop the best technology to treat diabetes now. I don’t agree that the JDCA believes an artificial pancreas is a cure. If you visit their website or read their definition, it states : cure must be delivered through a treatment that:
    – If it is surgical, requires a full recovery of less than 72 hours
    – If it is pharmacological, requires no more than a reasonable pill
    and/or injection regimen

    While it will be some time before we see what the JDCA can truly accomplish I believe it is a dynamic new approach to look at the fundraising and use of money in working towards a cure for type 1. Brian Kelly, the Founder and sole funder of the project has a very successful business background and has a second grader who has lived with type 1 since the age of two. He is dedicating his resources and abilities to Tommy and the rest of people with diabetes to take a closer look at if and how we can drive research forward with the dollars we have. Because they are financially independent I believe although it is fine to express opinions, it hard to compare to those who do not agree with the new JDRF focus of not only cure focused research; as they use funds from a multitude of places. I will be interested to see what Brian and his team’s future reports show.

  3. Karen
    Karen September 22, 2011 at 6:52 pm | | Reply

    What is the bottom line? I think, in this day and age, with such widespread corruption and the use of “donations” for personal gain, any watchdog agency should be welcomed.

  4. Stoyan
    Stoyan September 23, 2011 at 9:07 am | | Reply

    Thank you very much to Allison and Amy for the assistance with putting this article up!

    Our main goal at the JDCA is to reach out to the type 1 community and present the most accurate and insightful information that we can. We believe that the operations of the major diabetes foundations should be more transparent, and we believe that the donors and the members of the diabetes community deserve to have their voices heard and their wishes respected.

    It is always exciting to get to hear from people – so please, shoot us an email at jdca2025@gmail.com, visit our Facebook page – http://www.facebook.com/thejdca, comment on our blog – we love getting feedback. The more opinions and thoughts we get, the better we will be able to live up to our motto and represent the community.

    - Stoyan

  5. Bruce Tallerman
    Bruce Tallerman March 15, 2012 at 5:59 am | | Reply

    i am a Type 1 and also a writer who works periodically for JDRF. I know quite a bit about the latest research projects and have written extensively about diabetes. I would like to use my knowledge, experience, and insight as a writer and type 1 further the cause of JDCA. Thanks.

  6. Cori Harlem
    Cori Harlem April 19, 2012 at 8:19 am | | Reply

    We are spearheading for the cure, NOW is when it is needed

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