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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. mamattorney

    mamattorney Approved members

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    Our local walk conflicts with our son's soccer club's big tournament every year (well, the past two years - but it looks like they both choose the first weekend in October every year). We walked in the ADA walk instead which I like supporting because my daughter had a fabulous time at an ADA camp.
     
  2. Christopher

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    I hear what you are saying but I think it is important to remember that (as Nancy alluded to) it is our job as parents to protect our children from this type of thing by informing them and putting things in perspective for them when it comes to a cure and/or new research and technology. I have always been very upfront with Danielle that while many people are working on this disease, there are no guarantees about when or if this disease will ever be cured. We can hope that it will be, and I am sure technology will continue to advance, but we have a very guarded approach to any new claims and/or dates that are issued to the public.

    Since I work in the healthcare industry she does hear me talking about the inner workings of the FDA and the actual process that companies go through to get medication and devices approved. So she may have a more in depth understanding than others who may not be as close to the process.

    For me, it is always a fine line between hope and despair, optimism and bitterness. I personally do not have much faith that this will be cured in our lifetime, but I keep that to myself. I know technology will continue to advance and so at least that is something.

    As for the original question, we do the Ron Santo walk every year, it is at a huge, gorgeous park with rolling hills and large bodies of water. It is actually this Sunday. But as others have said, it is more of a social event with Danielle and her friends as opposed to donating money or doing the whole "Team X" t-shirts and such.

    I am sorry your daughter was hurt.
     
    Last edited: Oct 3, 2014
  3. DavidN

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    I called Dexcom to ask if they've ever received any sort of financial assistance from JDRF and they said no. Though not sure if Dexcom has benefited from JDRF in a less direct way?
     
  4. DavidN

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    I'm only 2 years and change into this and I know in the past I've posted some optimistic stuff about technology advancements etc ... But as time passes, I'm finding myself creeping more and more into your camp. I agree. There will be no cure in our lifetime. I think technology will advance to a point where maintenance will be much much easier, but no cure. Also, the "false hope" issue is not just something that affects our kids and something they need to be protected from. It very much affected me post diagnoses. When nurse after nurse, followed by our hospital endo, told us that there will be a cure within 3 years, I bought it. I didn't know better.
     
  5. DavidN

    DavidN Approved members

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    There are a handful of posters on this site that I pay particular attention to and you are one of them. But I don't fully get this ^^^^.

    I can see how the "false hope" issue could really rub people the wrong way and turn them off of JDRF, but that doesn't even make your top ten.

    From your two posts you really don't seem to care for JDRF. You were "dragged along" to participate this year and you do not donate etc ... From the post above, that dislike seems to stem primarily from how they are allocating their money. Is this correct? The challenge is every other person with T1D and parent of CWD have different views on how to allocate funds. Even on this thread, a very small sample size, the wish list of spending is varied. I'd personally like to see a lot more allocated to smart insulin projects. JDRF can't make everybody happy, particularly when the base of those affected is so large and their wants so varied. Isn't this understandable? They seem to be doing a pretty good job of spreading it among lots of important areas, or am I missing something?
     
  6. caspi

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    I find it quite upsetting that doctors and nurses are still saying that a cure is close. We were told it should be within 10 years when my son was diagnosed 8 years ago. We were also given a JDRF "Bag of Hope" while in the hospital and we were very excited to start fundraising. That all fizzled out for me personally around the 3 year mark when I saw less emphasis on finding a cure and more on technology. Technology is a GREAT thing, don't get me wrong, but when we were raising funds under the premise of a "Walk to Find a Cure", only to find out that wasn't really the case, it was upsetting. I guess in a way I kind of felt "duped". One of the good things that came out of that Bag of Hope besides the cute bear (which he still has in his closet :wink: ) was a flyer for CWD and I was able to immediately connect with people. So for that, I am thankful. :smile:
     
  7. swellman

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    Maybe I'm mathing wrong but based on your post 65/110 is in fact a majority and I would include the other 8M for prevention research. That's almost 70% and that pretty vast. What am I doing wrong?
     
  8. chalke43

    chalke43 Approved members

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    We aren't walking this year, but my husband and I may be going to a Kegs & Eggs event our local JDRF Youth Leadership Council is having after the walk.
     
  9. sszyszkiewicz

    sszyszkiewicz Approved members

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    We were not treated to sunshine and rainbows at diagnosis. The endo that was on call Thanksgiving weekend in 2013 looked me in the eye after I asked a question about a cure and said "Well Mr Szyszkiewicz, this is a very difficult problem to solve. There are people trying to solve it, but it is a very difficult problem to solve." There was no sugar coating at diagnosis. It was a sober, matter of fact, get used to your new reality, like now, kind of conversation.

    Having said that, I do have hope, and I do not think it is a false hope, or a wishful thinking hope. It is a realistic hope. I dont think one guy/group is going to solve this problem. I think it will be a combination of "A ha" moments over a period of time that will get humanity there. I think it will be, like many other things that get "discovered", small incremental steps, perhaps in areas not even concerned with T1D at all, that accumulate into something that does the trick.

    Whether JDRF helps that cause as much as they might, being a newbie, I am in no place to judge that. The best you can do is look at whats in the pipeline, and see how much JDRF helped in that regard. I also think it is a very healthy thing for any charity to undergo some scrutiny. It reminds them of the purpose of their existence. Their job, in the end should be to lose their jobs!!

    I also think that, although the JDRF can remove some early stage risk from various projects, capitalism will ultimately produce a cure. We are not a 1 in a million kind of disease. There is enough $$ in T1D to attract some attention from people looking to build a better mousetrap, but the status quo is always difficult to dislodge. A valid strategy, instead of donating to a charity, might be investing in companies taking a swing at this. You could for example invest in Sernova, or the company formulating stable gluagon, etc..

    In the final analysis, however, I have hope.
     
    Last edited: Oct 3, 2014
  10. Megnyc

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    I agree that it is difficult to please everyone. Currently, my biggest issue is their choice of artificial/bionic pancreas project to support. As far as I can tell Ed Damiano's bionic pancreas has not received JDRF funds since a project that ended in 2011. Since then, JDRF has awarded 5 separate grants to the UVA artificial pancreas project. I personally believe the artificial pancreas is inferior to the bionic pancreas and I am not sure why exactly JDRF is choosing not to support it. Additionally, they don't hesitate to publicly claim their funding of the bionic pancreas whenever it receives positive press; which, I guess is fair since they did provide some funding early on but not for the current iteration. I agree that they need to spread out their money to different areas; yet, I believe when they are choosing which project in a certain area to fund they should choose the most promising one (if they are only going to fund one). I don't believe they made the correct choice in this case.

    I also have concerns about the remarkable number of big pharma and industry connections their executives have and the conflict of interest that presents. In the interest of full disclosure, I spent two summers working full time for a major pharmaceutical company and still receive compensation for continued work on occasion so I'm not so innocent in that regard either. I'm not one to say that any thing and everything related to big pharma is evil, but I question the fact that JDRF has a history of funding research conducted by companies their executives have a financial interest in.

    I don't really think you are missing anything. Honestly, if it were not for their funding of the artificial pancreas and their strange partnership with Animas I would probably be fine with JDRF. Also, I would like to say that I am really not as cynical as I sound here. I think it is great that people are getting out and supporting a diabetes charity. I just hope they know they have options if they would rather their donations go to a particular area of research they believe is especially promising.

    ETA: I personally don't believe I will see a true biological cure in my lifetime. I do believe in the next 10-15 years there will be significant technological advancements that will greatly reduce the day to day burden of diabetes to the point that it is just a minor inconvenience. I will also say that the bionic pancreas is the first diabetes advancement that I have had true hope for in the past 11 years.
     
    Last edited: Oct 3, 2014
  11. Cheetah-cub

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    I also have this hope that a cure will be found. I don't know if it will be 5 years, 10 years, or 15 years from now... I believe JDRF is actively funding the research for a cure.

    In the mean time, I actually think it is smart of JDRF to look for better treatment options for T1D. The miserable treatment regime is what makes T1D such a harsh disease.

    T1D technology has come a long way in just the last 20, 30 years. In "Think Like A Pancreas", the author was diagnosed with T1D in 1985, he humorously referred to his finger prick device as the "guillotine", and that first generation big backpack insulin pump...

    When we got our pump in March of this year, it was such a game changer from our MDI days, it made our lives so much better. Then we got our Dexcom, another god send T1D device.

    I don't know when a cure will be discovered, but I found myself just as excited for kinder and nicer treatment options on the horizon.

    My family will participate in our local JDRF walk.
     
  12. Beach bum

    Beach bum Approved members

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    I agree, however, there new logo is what peeved me. "Improving Lives, Curing Type 1." They aren't curing Type 1. They are promoting the AP, which is a tool to help improve lives, but it doesn't cure diabetes. They need to be more clear in their mission. Are they trying to cure Type 1 or are they trying to come up with the best possible artificial pancreas?
     
  13. acoppus

    acoppus Approved members

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    We walked this year, and raised quite a bit of money. But for us the walk is more of a show of solidarity.. family and friends got together to support my son. He is 5 and doesn't necessarily get the raising money and talk of a cure stuff. But he does understand that his friends are there for HIM.
     
  14. DavidN

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    I would guess the AP etc ... is the "Improving Lives" part.
     
  15. swellman

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    They are doing many things simultaneously which, in my opinion, is a really smart move. It makes no sense to throw all the research funds into just one big cure basket. It is a very difficult problem to address and I have to applaud their decision to place some of the research money to help those with T1D that have supported them all these years. I honestly get the animosity towards the AP. It wasn't even close to being their biggest research bucket.
     
  16. caspi

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    ^This^ should be the mantra of every endo speaking to a newly diagnosed family.
     
  17. joshualevy

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    The guy you spoke to at Dexcom was wrong, and one web-search would have shown that he was wrong. Just go to jdrf.org and search for Dexcom, here is one item that came up on the first page:

    JDRF Partners With Dexcom to Support the Manufacture of a Smart Transmitter Prototype for Artificial Pancreas Research
    April 20, 2012 by Thania Benios
    JDRF has partnered with San Diego–based medical company Dexcom, Inc. to support the manufacture of a so-called smart transmitter prototype, which will be available for research purposes before it will be commercially available. The technological advance not only would reduce the number of devices a person would have to wear with an artificial pancreas system, but would also enable wireless connectivity among these devices—an important feature that would give people with T1D the freedom of movement while participating in real-life outpatient studies.

    Here is an example of "secondary" support, where JDRF is funding research that uses DexCom equipment, but is not being run by DexCom itself:
    http://jdrf.org/press-releases/jdrf...utomated-system-for-managing-type-1-diabetes/
    (and I'm sure there are many more, I just don't have time to find them)

    Although JDRF did fund various CGM research projects many years ago, the one study they funded that sticks out in my mind had a slightly different goal. After research showed that CGMs worked, many insurance companies refused to pay for them, on the basis that they did not improve BG control, they were convenient, but not necessary for good BG control. Basically the insurance companies claimed that they might have given people "peace of mind" and made life simpler, but were not medically necessary. JDRF funded a large study which showed under real world use, that CGMs did (statistically) improve BG numbers and/or A1c numbers. (This was many years ago, and I don't remember the details). The result was that more insurance companies started to pay for CGMs. Even though my family does not use a CGM, I still realize that this research had a huge and positive impact on many people who do. Even if it was not cure research, it was very valuable and useful research. And I suspect that if a CGM company had done the exact same research, it would not have had the same impact.

    Joshua Levy
     
  18. mmgirls

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    We walked this year, but we did not do any "fundraising" we only made a family donation to the team that we joined.

    I am completely disheartened by our local chapter, after more than a few things that happened over the last few years. And until they can reach out personally to me and rebuild that trust, I am done with them.

    As a Family over the last 8 years we have done more than our part with adding to "data" in the trial Net Study and the Oral Insulin Study, delivering the "Bag of Hope" to newly Dx'ed families still in the hospital.

    I am saddened by our local chapters struggles yet, I do not have to struggle with them.
     
  19. swellman

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    Quoted to edit.
     
  20. Sarah Maddie's Mom

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    I can't speak for anyone else, but the announcement of JDRF's funding of the AP by granting Animas funds 1. came at the time (as I recall) that JDRF announced it's shift in it's stated goal away from cure research to technological improvements and 2, was the first that that I was aware that there were any corporate partnerships with for-profit entities.

    I'd have to poke around in the archives to link but at least for me, that combination left me feeling, rightly or wrongly, that JDRF was too invested in perpetuating itself and was using the hard won donations from kids and families to fund private sector research that might benefit us, but would benefit the bottom line of medical device manufacturers in the process.

    That probably makes me seem naive, and maybe I was holding out some hope that, despite the Faustman debacle a decade earlier, that JDRF was not a Corp. political machine with many competing interests not all of which struck me as in the best interest of my kid.

    And now it seems clear that the BP is a far better solution that the AP into which so much $ has been spent.

    I'd go on but I've got leaves to rake.
     

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