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Thread: JDRF going forward

  1. #1

    Default JDRF going forward

    Interview with new JDRF President and CEO Jeffery Brewer lays out the future plans for the organization.

    http://www.diatribe.us/issues/29/diabetes-dialogue.php
    Sarah
    Mom to DD now 16, dx @4
    Cozmo pumper @6
    Minimed pumper @13
    G4 @ 15


    "Happy Birthday, Dr. Banting! Now... let's eat cake! Because, we CAN!" - MCS

  2. #2

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    Truly, that's the most depressing thing I've read in a while. Basically, we're nowhere near a cure, nowhere near the AP, nowhere near preventing T1, and the FDA is putting the clamp down on all new technology.

    But JDRF is super excited about their new partnership with Animas!

    Yay?
    Mom to J., age 10
    Dx 2007 @ age 3
    Medtronic pump and CGM (4/2008-6/2013)
    Tandem t:slim and Dexcom G4 CGM (current)

  3. #3
    Join Date
    Mar 2008
    Location
    Colorado
    Posts
    4,264

    Default

    You can get excited if you've invested in a stock portfolio of diabetes products. It's growing industry with unlimited profit potential. And foundations will help fund the R&D.

    Rella, mom to Brendan -- 13-yrs-old, dx'd March '08 at 8 years old
    Navigator CGM: 11/08 to 1/11
    Dexcom CGM since 2/11, G4 as of 10/12
    OmniPod since 7/09


    Help Cure Childhood Diabetes
    Facebook


  4. #4

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    I havent read this through completely yet but to me, alot of it looks like we're being thrown under the bus and abandoned. I absolutely agree that prevention is very, very important. I want to see a day soon where no parent has to be told that their child has type 1 diabetes and a day where no child goes into DKA and has to be hospitalized or worse. And I do agree that preventing complications is very important. There are alot of adults with type 1 out there and their needs have to be looked at carefully and addressed as well as our CWD but I dont want us to be forgotten, I dont want our kids to be forgotten.

    If we are out there doing the walks and raising funds right along with the adults with type 1. I want them to continue striving for a cure for our children and adults with type 1. To me its worrisome to see him say that if a cure isnt going to be found in 5 years that they will concentrate more on prevention of complications. With the economy the way it is now every dollar of research money is going to be hard fought for among scientists. And I want a good portion of that going to towards making type 1 diabetes stop and making it so our kids dont have to have any insulin except for their own that their bodies can produce again.
    Becky, Mom to Steven 12, dxd 7/04 MDI humolog and Lantus, Harry 14 non-d My 2 awesome boys

    Right now three things remain: Faith, hope and love But the greatest of these is love. 1 Corinthians 13:13


    "There is no rightness in diabetes. Just sometimes, you're less wrong." by Jacobs Dad

  5. #5

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    I've never held out much hope for JDRF to rescue my kid, nonetheless this statement, "I think the cure is different things to different people at different stages of diabetes. I think the only complete cure at the end of the day is you never get diabetes to begin with ? it?s probably prevention." Well, that pretty much sealed the deal.
    Sarah
    Mom to DD now 16, dx @4
    Cozmo pumper @6
    Minimed pumper @13
    G4 @ 15


    "Happy Birthday, Dr. Banting! Now... let's eat cake! Because, we CAN!" - MCS

  6. #6
    Join Date
    May 2010
    Location
    Canada
    Posts
    432

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    Wow. That is discouraging but if anyone hasnt heard of Alberta Diabetes Research check them out at www.afdr.ab.ca

    All the donations they (AFDR) receive go to reasearch and they never restrict whatthe scientists work on. They have free reign to try everything to develop a cure. Jdrf had a lot of restrictions and the money went to more than just research.
    Son dx 09/17/2004 at age 4 type 1 diabetes
    Now age 11.

    Green Animas Ping pump - Apidra since 03/11

  7. #7
    Join Date
    Mar 2008
    Location
    Colorado
    Posts
    4,264

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    I feel like a broken record. But if you want the donation dollars you work hard to raise and beg from your family and friends to do something towards a cure, then you have to find the labs doing the promising research and give the money directly to them. It's the only thing that is effective.

    As far as complications prevention, keep giving money to JDRF and you'll likely have the "research" helping to support growing markets for existing complications drugs of partner JDRF pharmas. If we want our kids to be free of complications, then we need to support the basic work of people like Dana Spence (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2827267/). There's no money in C-peptide therapy -- unless they chop up the peptide, so they can patent it and charge us a fortune -- that after removing it during insulin production which really stings. But even if there's a big market for someone to put out a C-peptide-like drug, the companies have much larger profits to make off their existing drugs that treat symptoms, rather than prevent complications. And that's the sad truth.

    You want change, then you have to do it yourself. If we had enough parents join together, we could raise enough money to fund some small research projects. But, we have to believe in ourselves enough to do it and we have to believe that it would make some difference some day.

    Rella, mom to Brendan -- 13-yrs-old, dx'd March '08 at 8 years old
    Navigator CGM: 11/08 to 1/11
    Dexcom CGM since 2/11, G4 as of 10/12
    OmniPod since 7/09


    Help Cure Childhood Diabetes
    Facebook


  8. #8

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    Quote Originally Posted by Sarah Maddie's Mom View Post
    I've never held out much hope for JDRF to rescue my kid, nonetheless this statement, "I think the cure is different things to different people at different stages of diabetes. I think the only complete cure at the end of the day is you never get diabetes to begin with ? it?s probably prevention." Well, that pretty much sealed the deal.
    Yeah, one of my greatest fears is that they will find a way to prevent T1, and then all research for a cure and technological advances will just dry up. Yes, it is wonderful for all of those children who will never get T1, and I'm glad that my kids will never have to be parents of a child with T1, but...what about OUR kids?
    Mom to J., age 10
    Dx 2007 @ age 3
    Medtronic pump and CGM (4/2008-6/2013)
    Tandem t:slim and Dexcom G4 CGM (current)

  9. #9
    Join Date
    Dec 2010
    Location
    Long Beach(CA)
    Posts
    149

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    Wow, this is a tough one... I dont like the idea of moving the focus from the kids to the adults, thats why I have never thrown money or energy towards the ADA, no offense but JDRF as the name says should be for our kids. We have made some very good friends with our local chapter and I dont think I could give up on them. I would feel like I was letting Miranda down and even if JDRF choose to go this route I will probably still be their for them. I have to focus on something or I will feel like I'm just putting my hands up and surrendering,
    Hard to write this...
    Gerry Speirs,
    Dad to Miranda age 5.5, DX at 3.5,
    Pumps with a pink Ping.

    http://onedadandhisblog.blogspot.com/
    http://foodnessgracious.blogspot.com/

  10. #10

    Default

    Quote Originally Posted by gerry speirs View Post
    Wow, this is a tough one... I dont like the idea of moving the focus from the kids to the adults, thats why I have never thrown money or energy towards the ADA, no offense but JDRF as the name says should be for our kids. We have made some very good friends with our local chapter and I dont think I could give up on them. I would feel like I was letting Miranda down and even if JDRF choose to go this route I will probably still be their for them. I have to focus on something or I will feel like I'm just putting my hands up and surrendering,
    Hard to write this...
    Honestly, the ADA has done more for my family than JDRF. Other than the "Bag of Hope" we got at diagnosis, I'm not sure JDRF has done squat for us. The ADA assisted us with our complaint with the Office of Civil Rights, and also puts on events for families in our area (we have no local JDRF chapter).
    Mom to J., age 10
    Dx 2007 @ age 3
    Medtronic pump and CGM (4/2008-6/2013)
    Tandem t:slim and Dexcom G4 CGM (current)

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