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JDRF 2014 Walk - Poll

Discussion in 'Parents of Children with Type 1' started by DavidN, Oct 2, 2014.

?

Are you walking this year?

  1. Yes

    16 vote(s)
    44.4%
  2. No, but maybe next year

    8 vote(s)
    22.2%
  3. No, never

    12 vote(s)
    33.3%
  1. DavidN

    DavidN Approved members

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    Are you walking this year?

    I suspect its their largest fundraiser and I'm just wondering what sort of participation they get from folks on this site. There is not a good or bad answer, just wondering.
     
  2. Mimikins

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    I probably won't be able to do it this year. The only dates close by to me conflict with other obligations.
     
  3. Beach bum

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    We did it last weekend. My daughter likes to gather a group of friends and walk. It is a fun morning for her and our branch puts on a nice event.
     
  4. Nancy in VA

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    Our chapter does a spring walk. We did it for a few years and conflicts have prevented us for the last few. I would say that probably the walk and the gala probably run neck and neck in our chapter with comparable fundraising. Different audience - source of donations.
     
  5. MomofSweetOne

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    Yes, but my daughter is expressing negativity about having been told that the artificial pancreas would be through the FDA and on the market this coming spring her first year. She's very angry with the lies they told her then. I know this comment could turn the thread hot, but this is her reality. They told her something they knew was impossible given the speed at which the FDA approves devices. It's hard to argue with her. I heard the same speech and information and was hopeful about the end of carb counting and the rest.
     
  6. Megnyc

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    I actually went to a JDRF walk this year! It was hosted at my college. My boyfriend's fraternity was forced to volunteer as punishment for their various transgressions and I got dragged along. I'm not a JDRF fan (I won't even donate when they have the sneakers at the grocery store!) but the walk was actually pretty impressive for a relatively small town. They raised a decent amount of money and it seemed well organized. A surprising number of students at my college participated and I keep seeing people walking around with JDRF shirts now.
     
  7. Nancy in VA

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    Was that a JDRF person or a vendor? I swear, every pump vendor that is integrating with CGM is saying "its coming in the next few months".

    Even though we are raising money for a cure, I make it very clear to Emma that this is not something we expect any time soon!
     
  8. susanlindstrom16

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    We walked the past two years but this year its conflicting with other engagements
     
  9. jenm999

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    I asked my son if he wanted to walk this year (6 months in) and he said, Mom, does EVERYTHING in my life have to be about diabetes? So I let it go.

    JDRF does some great work and we are closer to a cure because of them.

    That said, the amount of money the spend on a cure vs the nebulous "education" is laughable. These reports are illuminating.

    http://www.thejdca.org/wp-content/uploads/2014/09/Solicitation-vs-Allocation.pdf
    http://www.thejdca.org/wp-content/uploads/2014/08/JDRF-research-funding-report-.pdf
     
  10. MomofSweetOne

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    It was a doctor who spoke as one of the JDRF event speakers on the different research project areas going on. She would have known better as a T1 herself that nothing, and especially not a brand-new technology, would make it through that fast.

    I've heard that the majority of money raised comes in the first two years that families are coping with diagnosis. It's just wrong to prey on them (us) with false hope. Tell the research but stop putting dates that aren't believable to families not yet experienced enough to know better.
     
  11. DavidN

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    Is this "false hope" the top gripe with JDRF? I don't mind a hot topic. I'm trying to learn more about why some are disenfranchised. I'm learning myself.
     
  12. Sarah Maddie's Mom

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    But are you?

    From JDRFs website http://jdrf.org/about-jdrf/fact-sheets/research-funding-facts/

    Research Funding Facts

    JDRF’s research goal is to discover, develop, and deliver advances that progressively remove the impact of type 1 diabetes (T1D) from people’s lives until we achieve a world without T1D. As the global leader in the fight against T1D, JDRF’s research programs are comprehensive and reflect our strategic plan to bring about a continuous flow of life-changing therapies and, ultimately, a cure for T1D. JDRF is driving research across the entire scientific spectrum, from discovery in the laboratory to delivery of new technologies and treatments to people with T1D.

    JDRF Research Funding Overview

    • JDRF provided more than $110 million for T1D research in 2012, and currently has research projects in 17 countries, totaling $568 million. Since its founding in 1970, JDRF has funded more than $1.7 billion in diabetes research and has dramatically advanced the T1D scientific frontier and the management of this disease.

    • More than 80 percent of JDRF’s expenditures directly support research and research-related education. JDRF maintains one of the best records among nonprofits of using supporters’ contributions effectively.

    • In 2012, JDRF supported more than 50 clinical studies, evaluating new therapies and treatments for T1D and seeking to better understand the disease’s cause and progression. This growing emphasis on clinical trials testifies to JDRF’s commitment to moving beyond scientific discovery to delivering solutions to better treat and cure T1D.

    JDRF’s Research Goals

    JDRF is committed to progressively removing the impact of T1D from people’s lives. JDRF is focused on delivering a sustained stream of new, life-changing therapies from the near term to the long term, with the ultimate goal of a world without T1D.

    JDRF’s near- to mid-term goals include delivering:

    • an automated low-glucose suspend artificial pancreas system, which predicts and prevents severe blood-glucose lows;

    • a treat-to-range artificial pancreas system, which automatically keeps blood-glucose levels in a specified range;

    • the use of existing type 2 diabetes drugs to improve blood-glucose control in people with T1D compared to the use of insulin alone;

    • the use of donated human islets as a treatment for low–blood glucose unawareness.

    JDRF’s long-term goals include delivering:

    • a beta cell encapsulation product providing insulin independence for more than a year without the need for chronic immunosuppression;

    • novel therapies for beta cell survival and immune modulation that when used in combination can extend the period of insulin independence after diagnosis for more than two years;

    • advanced-generation artificial pancreas systems such as those that deliver two hormones and those that have full (24-hour) automation features that further improve glycemic control;

    • a glucose responsive insulin that provides glycemic control with a single shot per day, or less often;

    • novel therapies that improve eye disease in people with T1D;

    • therapies that prevent or delay the onset of insulin dependence for at least two years in people with autoantibodies for T1D.

    2012 JDRF Research Funding

    Cure Research $65.1 million
    Beta Cell Health & Regeneration Therapies $23.9 million
    Immune Therapies $6.8 million
    Beta Cell Encapsulation Therapies $10.4 million
    Cure Biomarkers and Imaging Tools $17.2 million
    Cure Transportfolio Projects $6.8 million
    Treat Research $35.7 million
    Artificial Pancreas Systems $12.4 million
    Glucose-Control Therapies $2.5 million
    Complications Prevention and Treatment Therapies $20.8 million
    Prevention Therapies Research $8.2 million
    General Research Projects $1 million
    TOTAL 2012 RESEARCH FUNDING $110 million
    Fact Sheets
    Statistics: JDRF and Diabetes
    Facts About JDRF
    Research Funding Facts
    General Diabetes Facts
    Type 1 Diabetes Facts
     
  13. MomofSweetOne

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    When I personally know people who were told 30+ years and 21 years ago that there would be a cure within 5 years, the 5 year statement becomes beyond inexcusable. It's cruel to tell newly diagnosed children that they'll be cured or have a device that does the hassles within 5 years. Even now, as much has been developed in the past few years, I don't think Ed Damiano or anyone else is going to have something through the FDA in 5 years. Medtronic's Enlite was released in Europe in the fall of 2011, and it just made it here this year. Three years to get a sensor improvement approved. The artificial pancreas will be MUCH longer than that, and rightfully so since lives will be dependent upon its accuracy.

    The JDRF walk is a social event to see friends for my daughter. Otherwise I don't think she'd go. At least not this year.
     
    Last edited: Oct 2, 2014
  14. Megnyc

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    Personally, the false hope doesn't even make the top ten of my issues with JDRF. Mainly, I disagree with where they are putting their money. I would like to see much more funding go to beta cell encapsulation and stem cell research rather than their research into various immunomodulating drugs. I also strongly disagree with their choice of which artificial/bionic pancreas project to put the majority of their support. Finally, I find the various big pharma connections their executives have/had to be a bit questionable. However, I am sure the people deciding where the money goes are much more qualified than me to make those decisions.....
     
  15. swellman

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    Illuminating? Really? I noticed you failed to suggest an alternative. Is there a reason for that? People who are pissed at JDRF and ADA that fails to actually contribute to a path forward. Who are these people?
     
  16. swellman

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    I'm honestly curious about what your point is. Honestly.
     
  17. Sarah Maddie's Mom

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    Nancy wrote that she is "raising money for a cure" and I simply noted that the vast majority of JDRF's research funding is no longer cure research.
     
  18. Beach bum

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    I agree with you on all of this.
    They also peeved me a few years back when they rebranded themselves and made it seem like they made it seem like they were 100% for the AP and moving away from a true cure, but they weren't really being firm on their stance. Wishy washy. Fine, if you want to say OK, we find that the AP is going to be our main area of focus because we don't see a biological cure possible, but they didn't. They put all their eggs into the AP basket.
    Again for us it is purely social.
     
  19. sszyszkiewicz

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    Did the JDRF help move CGM's along? I'm "new".

    I was going to walk.
     
  20. jenm999

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    Hmmm, not sure why you are being antagonistic.

    Yes, I think these reports are illuminating because they directly impugn the JDRF's marketing message and even their slogan - making type 1 type none. Nevertheless, as I stated, I recognize that they are behind many of the important cure-related advances and make an annual financial contribution.

    My choice "in contributing to a path forward" has been to volunteer for JDCA, which lobbies JDRF to devote more money to cure research and helps donors communicate that desire when making a large contribution. And to help folks understand that these big walks feel good but don't actually advance a cure (which I think is true for other disease-specific fundraisers as well) so they can make informed decisions about where to direct their efforts and money.
     

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