advertisement

  1. This site uses cookies. By continuing to use this site, you are agreeing to our use of cookies. Learn More.

JDRF going forward

Discussion in 'Parents of Children with Type 1' started by Sarah Maddie's Mom, Feb 1, 2011.

Thread Status:
Not open for further replies.
  1. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Joined:
    Sep 23, 2007
    Messages:
    12,510
  2. hawkeyegirl

    hawkeyegirl Approved members

    Joined:
    Nov 15, 2007
    Messages:
    13,151
    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?
     
  3. buggle

    buggle Approved members

    Joined:
    Mar 24, 2008
    Messages:
    4,267
    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.
     
  4. Becky Stevens mom

    Becky Stevens mom Approved members

    Joined:
    Oct 14, 2008
    Messages:
    8,719
    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.
     
  5. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Joined:
    Sep 23, 2007
    Messages:
    12,510
    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. :(
     
  6. Tuff

    Tuff Approved members

    Joined:
    May 17, 2010
    Messages:
    432
    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.
     
  7. buggle

    buggle Approved members

    Joined:
    Mar 24, 2008
    Messages:
    4,267
    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.
     
  8. hawkeyegirl

    hawkeyegirl Approved members

    Joined:
    Nov 15, 2007
    Messages:
    13,151
    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? :(
     
  9. gerry speirs

    gerry speirs Approved members

    Joined:
    Dec 18, 2010
    Messages:
    149
    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...:(
     
  10. hawkeyegirl

    hawkeyegirl Approved members

    Joined:
    Nov 15, 2007
    Messages:
    13,151
    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).
     
  11. Marcia

    Marcia Approved members

    Joined:
    Feb 22, 2007
    Messages:
    844
    I am sure JDRF will still need our beautiful (forgotten) children to parade in front of congress and participate in fundraising walks. Seems like people are more likely to donate to the 15% of T1's who are children. This interview makes me angry.
     
  12. PatriciaMidwest

    PatriciaMidwest Approved members

    Joined:
    Mar 2, 2010
    Messages:
    1,297
    The article depressed me too. I too feel a bit abandoned. We have lost some key manufacturers too (Abbott, Cozmo) in a field of players that was already too narrow.

    The ADA has done more for us as well. They put together our local diabetes camp (I naively thought JDRF would do this) and it was awesome. They sponsor the Safe at School campaign which has great training materials for school personnel and also helped me sort through some 504 issues. They are on top of all the diabetes legislation too. I have a lot of respect for them.

    Buggle -- you've hit the nail on the head. I've been trusting the JDRF to do all the homework on where the dollars should go, and I need to change that.

    You are so right about patents...I worked at a big pharma company for several years and it was upsetting to see how money talks. New drugs are developed around patents schedules. Something superior always pops up about the same time a company is about to lose a profitable patent. Look at Prilosec and Nexium. Nexium is just a reverse isomer of Prilosec and magically appeared just as the very profitable blockbuster patent on Prilosec was ending, giving them another patent worth literally billions. I think that was the plan all along, they just kept it in their back pocket until they were about to lose their patent monopoly.

    In my opinion, the cure will be found or at least funded by someone personally affected by this disease. If Bill Gates had a child or grandchild with it, we might see some faster progress. Not that I would wish this disease on anyone, but you know what I mean. Outsiders don't realize why we need change (just take insulin...so easy) and the T1 market is too small for many companies to justify investing tons into research. I had big expectations from Brewer, given that his own son is a T1, but I don't know if he is our knight in shining armour. Sorry to sound so jaded.
     
    Last edited: Feb 1, 2011
  13. gerry speirs

    gerry speirs Approved members

    Joined:
    Dec 18, 2010
    Messages:
    149
    I didnt want to sound like I was bashing the ADA, I just never felt the need to research them, maybe I will now though....
     
  14. KyleBugsMom

    KyleBugsMom Approved members

    Joined:
    Sep 13, 2009
    Messages:
    200
    I guess I read it differently than everyone else. I do not feel like our kids are being forgotten. I feel like adults with Type 1 have not been a focus of the JDRF AT ALL in the past and now they are looking to include them. Not a bad thing - our children will be adults one day.

    I also didn't see that he was giving up on a cure. I think he wants to make life with T1 easier and prevent complications while they are searching for a cure. I would hate to see any of our kids have eye, kidney or heart problems while we are waiting for a cure. I would rather see them focusing on both.

    Oh and the FDA is slow and ineffective? Duh! We all knew that, right? :rolleyes:

    I did disagree with him that a cure is different things to different people. Last I checked a cure is a body that makes and regulates it's own insulin without the danger of being attacked by T-cells...


    I will disclose that I am an eternal optimist and hope that this guy does not disappoint.
     
  15. PatriciaMidwest

    PatriciaMidwest Approved members

    Joined:
    Mar 2, 2010
    Messages:
    1,297
    No problem...you weren't bashing them. The JDRF represents (or should respresent) the plight of our kids so to speak, but I have been pleasantly surprised by the ADA. I sometimes wish they were exclusively helping Type 1's, but I'm grateful for them either way.
     
  16. KyleBugsMom

    KyleBugsMom Approved members

    Joined:
    Sep 13, 2009
    Messages:
    200
     
  17. PatriciaMidwest

    PatriciaMidwest Approved members

    Joined:
    Mar 2, 2010
    Messages:
    1,297
    I liked the focus on kids, as this disease is so complicated for them and has such an effect on them, but the T1 adults should be included too. My bigger worry is that those without beta cells will be forgotten. Most of the clinical trials are looking for T1's that are recently diagnosed. If a cure for honeymooners was found that leaves us out of luck it would be really devastating for us, although I would be happy for those kids that were cured.
     
    Last edited: Feb 3, 2011
  18. Becky Stevens mom

    Becky Stevens mom Approved members

    Joined:
    Oct 14, 2008
    Messages:
    8,719
    The following is JDRF's mission statement:

    "JDRF'S mission is to find a cure for diabetes and its complications through the support of research."

    Followed by:


    The Juvenile Diabetes Research Foundation International (JDRF) is the world's largest charitable funder and advocate of type 1 diabetes research. JDRF was founded in 1970 by the parents of children with juvenile diabetes - a disease which strikes suddenly, making those affected insulin dependent for life, and carries the constant threat of devastating complications. JDRF has more than 100 chapters, branches and affiliates worldwide, which have helped to raise more than $1 billion for diabetes research.

    JDRF hosts various events throughout the year to raise money to fund research to find a cure for type 1 diabetes. JDRF has two main events, one in the spring known as the Promise Gala and the Walk to Cure Diabetes is in the fall.

    Through our partnerships with volunteers, families and businesses, JDRF is able to help make their dream for a cure a reality.


    (the bold is mine)

    I think that if we are displeased with JDRF going against their own mission statement we need to do just as those parents did in 1970. Get together, organise and decide where our money (and money raised by us) should go. We can have our own walks our own fundraisers for Dr Faustman or Diabetes Research Institute or ADA or any other organization that we feel is going in the right direction and is not moving towards making more money for pharmaceutical companies
     
  19. type1adult

    type1adult New Member

    Joined:
    Feb 1, 2011
    Messages:
    1
    I'd actually be quite happy to hear JDRF found a way to PREVENT diabetes or to hear that it a prevention is main goal.

    People don't seem to understand that in order to CURE those of us who have it (I was dx at age 6, over 16years ago) you first need to understand how to PREVENT people from getting it.

    Those of you who are upset that JDRF isn't curing your children need to calm down and look at the BIG picture.


    (btw, this is a one time post. I won't be coming back to this forum. I saw this thread tweeted and needed to voice my opinion as someone who has lived with Type 1 since I was 6years old. I actually don't care if there is a cure for me, as long as they find a way to prevent it. I live my life to the fullest, diabetes doesn't hold me back and I am FINE living with it for the rest of my life. I would rather SAVE others from having to deal with diabetes before I ever think about the possibility of myself living without Type 1.)
     
  20. Flutterby

    Flutterby Approved members

    Joined:
    Nov 11, 2006
    Messages:
    14,623
    I hope someone from JDRF is listening to the parents. Reading this thread.. I want a CURE for my child... not another piece of technology attached to her, keeping her a live.
     
Thread Status:
Not open for further replies.

Share This Page

advertisement