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11 Responses

  1. Roselady
    Roselady August 18, 2011 at 6:17 am | | Reply

    We’re still less than a year post diagnosis with a 4-year-old type 1, and I’m very happy to hear about JDRF reaching out to adults, because I feel that we’re all sharing the same challenges. And, kids have a lot to learn from adults. Personally, I’m anti adult stem cell research, so it was harder for me to support JDRF when I thought it was just about research. (Though, I’m in favor of other areas of research, ie adult stem cell.) So, with this broadening, I see more JDRF that I like.

  2. Cindy
    Cindy August 18, 2011 at 8:36 am | | Reply

    Our 12 year old was diagnosed almost 3 years ago. I’m very excited about the direction of JRDF. I realize that I’m a layperson, and have no scientific training, but I can’t help but think that there has to be a more accurate way of monitoring blood glucose levels and treating appropriately. Imagine if a heart patient had to check their blood pressure 10 times a day, and take meds based on the reading?

    As a person without diabetes, I sometimes feel these tools are really random number generators in disguise….we count carbs, dose insuling based on blood glucose reading and activity level, and still have a BG number a few hours later that’s too high or too low.

    I’d be happy with an implantable BG monitor (think cgm), and faster acting/faster fading insulin. Let’s improve the quality of life for the people living with diabetes.

    Oh, and while I’m on a rant, what can we do about the confusion between what Type 1 and Type 2 are. We had an editorial in our paper about the rise in diabetes, and how diet and exercise can cause/prevent it, blah blah blah. I write in each time I see these articles, asking for the writer to please clarify whether they’re writing about Type 1 or Type 2, only to pick up another magazine/paper and see it all over again!

    Thanks!
    Cindy

  3. Stimulating The Roots of Progress – A Message From JDRF’s CEO — JDRF Talk: The Official Blog of JDRF Bay Area

    [...] by JDRF Bay Area on 08/18/2011 ShareJeffrey Brewer, JDRF’s President & CEO, published this post in DiabetesMine.com. Read the entire post here. [...]

  4. Natalie
    Natalie August 18, 2011 at 12:24 pm | | Reply

    I’m happy to see the JDRF start to advocate for adults as well, because no one knows when the cure will be found, and meanwhile children do grow up!

  5. MoD4acure
    MoD4acure August 18, 2011 at 12:24 pm | | Reply

    I too love the direction that JDRF is going with Jeffrey Brewer at the helm. I as much as anyone want a cure for my 5 year old that has had this disease for nearly 4 years. In the meantime, I strongly believe that outreach is key for surviving. Diabetes is as much of an emotional disease as a physical one and in order to make it through, some days you need people to lean on. I love that Mr. Brewer points out the DOC as we are a strong and passionate group. I, along with many others, want to see that same connection of online support locally in our communities. As I mentioned on #dsma last night Online is quick in the moment, but offline connection is personal and a shoulder to cry on. I would do anything to make the IRL (in real life) connection more available to anyone that is in need of support. I am extremely passionate about outreach and connecting newly diagnosed and those who have had it for years together. We can learn so much not only from parent to parent but from PWD to PoCWD.

  6. Melitta
    Melitta August 18, 2011 at 1:05 pm | | Reply

    I think Jeffrey Brewer is helping to take JDRF in a better direction, in a smarter way. The only thing I would correct about what he says is the bit about “of the 30,000 new cases of type 1 every year, half are children and teens, and half are adults.” In fact, that information comes from the CDC’s “Diabetes in America,” and Mr. Brewer left off that the “Diabetes in America” states that an “unknown number” have slow-onset Type 1 diabetes (often called LADA or latent autoimmune diabetes in adults). Slow-onset Type 1s, usually adults, are largely ignored and misdiagnosed.

  7. Victoria
    Victoria August 18, 2011 at 2:35 pm | | Reply

    I’m thrilled with this article for several reasons. For one, I think Jeffrey Brewer is on the right track in terms of outreach and research. Secondly, he is beginning to see the benefit of support through outreach and the DOC. I think Juvenation is a wonderful idea, but I see many ways to improve it. I’d like to see local chapters and JDRF staffers encompass the DOC in a better way. The word “blog” is a misleading word and can be scary, but when properly overseen, a blog can make tremendous strides in a person’s life. I have so many ideas for JDRF and its outreach programs, but there is not enough space here. I think JDRF desperately needs to find a way to make personal connections on local levels. The mentor program is a fantastic start. An annual walk and bike ride is not enough. There needs to be more local and personal face-to-face interactions. If JDRF wants support, they have to provide it, too. Having a shoulder to lean on during a tough day or having a person to hug on a celebratory day are tremendous. Having those options needs to be a regular, re-occurring thing across the country. It’s what makes the DOC so successful! The DOC has shown the validity of personal connections and human stories.

  8. Andy
    Andy August 18, 2011 at 6:44 pm | | Reply

    I am a member of the JDRF Northwest Chapter and I met Jeffrey earlier this year. I too agree with the general direction he is taking the organization. We have to keep our eyes on the prize (a cure) but even the best of predictions put that years away. If we can alleviate the daily trauma my daughter (14) endures in the meantime, I am all for it. Better methods of testing, integrated CGM, smart insulin, etc.–they reduce the burden while we look for a cure. I appreciate that JDRF is giving more attention to adults with T1 (the vast majority) and I am very encouraged that JDRF is focusing on accelerating the process to get drugs and technology out of the lab quicker. I would also note that it is easy for an organization like the JDRF to have “mission creep” and start spending increased energy on “support” activities–because of the need for such activities. However, JDRF is a lean organization and will only be successful with a narrow and clear set of priorities—such as the ones Mr. Brewer laid out. Focus on a cure. Better treatment in the meantime. And do what we can to prevent more children being born with the disease.

  9. Scott K. Johnson
    Scott K. Johnson August 21, 2011 at 4:32 pm | | Reply

    Thank you for the continued dialogue Jeffrey, I very much appreciate it.

  10. Susan Whittier
    Susan Whittier August 22, 2011 at 9:33 am | | Reply

    I am encouraged by the direction / goals Jeffrey has set – I’m the ‘kid’ – now 61 years old – diabetes since a toddler. I wouldn’t be here without Dad’s like jeffery -[my Dad was one of them]. The fact re my continued survival is neither luck nor hard work – it’s primarily common sense. As Natalie stated – ‘children grow up’. The need to look for more patient friendly / fiscally accessable tools is so important – and the knowledge re identifying and then treating alleged complications early is something those of us still around know beyond a shadow of a doubt is most important. With that in mind, I can’t stress enough how important it is to keep all the healthcare personnel in a diabetic’s life up to date – through assertively funding research/access. Thanks to Jeffrey for taking on this position – from a Canadian Whittier.

  11. kathy
    kathy August 27, 2011 at 9:28 am | | Reply

    I think that the JDRF is a fantastic organization. I am an advocate. And I think that Jeffrey Brewer is a great guy with good intentions. But I would still like to see most of the emphasis on a biological cure. The artificial pancreas makes sense on paper, but I don’t see it as a step that will lead to a cure.

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