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What has JDRF done for you?

Discussion in 'Parents of Children with Type 1' started by hawkeyegirl, Feb 3, 2011.

  1. selketine

    selketine Approved members

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    I think you are saying it right but I think Nancy is saying that the two offices are fairly independent of each other. Perhaps there is some synergy with having the national office here - that it certainly is easier for the local office to get support. I can think of some non-profits that have both local and national offices here in the Washington area and the local office isn't all that awesome.
     
  2. lizzie

    lizzie Approved members

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    That would be cool for the type 1s to have a different shirt. At the walk in Kansas City, all the type 1s wear a blue hat. It's really moving to look around and see how many people come together to support each person in blue.
     
  3. Nancy in VA

    Nancy in VA Approved members

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    I agree that I wish the T1s got a different color shirt. I guess because so many people make their own walk team Tshirts, and so many don't wear the walk ones, they don't want to deal with it since they might not even really be seen. One year, they offered "Gold" shirts for people who raised over a certain amount (I think it was $1000) so I got a gold one that year instead of the regular white
     
  4. DadCares

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    At our walk, JDRF gives out type 1s a blue cap the says "JDRF Ambassador." That let's the kids wear their matching team t-shirt. The different color shirt is a cool thought.
     
  5. DadCares

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    I remembered another thing JDRF does well here. They have organized a diabetes vendor day the last couple years, about 6-7 weeks prior to the Walk. Vendors include OmniPod, Animas, etc. We had 300-400 people attend one year. They added face-painting, bounce houses and other fun for the kids. This past year they added a breakout session that my wife attended discussing the psychological impacts that occur to the child as we are constantly asking "What was your BG? That was a 'good' number. etc." They are planning another diabetes vendor day in August. This has been well received by JDRF supporters and by the general public. The only criticism I see is one year they picked a great location, another year they picked a location that was less attended. But the event was a great idea and they did it on a low budget by finding locations willing to house the event without charging anyone.
     
  6. lil'Man'sMom

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    I will be the very first to admit I am a little misguided at times but you are TOTALLY not seeing my post for what it is. I am not ungrateful...

    I commend the scientist and researchers who have given and will continue to give their knowledge and hard work to finding a cure.

    But lets also give credit to the people raising the money. The ones that have cared for their D child or their own D, raised millions of dollars (especially during economically lean times) to finance the scientist, researchers and labs to find the cure.

    So as "misguided" as I am, I am GRATEFUL to all those involved in finding a cure. I have not been able to do this (the point of my post) and guess I really have no to reason to contribute to this thread.
     
  7. buggle

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    I have more faith in you and other parents/grandparents that you can evaluate the quality of research. There are people out there who have children with a rare disease where very little research is being done and they have to learn about the disease and how to direct research that can lead to a treatment. Sometimes, it's a matter of whether their kids live or die.

    Some people have even come up with treatments themselves, like Lorenzo's oil. People with no background can learn enough to know what is promising and what is not. You just have to learn to trust yourself and dig in. Otherwise, you risk your hard-earned donations going to research that may never lead to anything that will help your child, or worse may have the reverse effect that we all want. The problem of corporate influence on research is a serious one, which is why I started this thread.

    This isn't just an issue with JDRF, DRI and other diabetes-related funding orgs. It's an endemic problem across every facet of medicine. If we pretend it doesn't exit, it perpetuates the problem, which makes any meaningful developments in treatment less and less likely.
     
  8. sooz

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    I am very sorry that I misunderstood what you meant in your post. I did not understand that when you said D families being cure searchers you were talking about parents raising funds. It is my mistake and I apologize to you. I also did not mean YOU were ungrateful. I was thinking of all that has been said about JDRF funded research not being productive, and I was thinking of the scientists who, year after year, are TRYING to find the key, and I was thinking that we all should be grateful for that, even though nothing has come of it YET. I also believe that parents giving their financial support is a huge part of funding the research, just as the March of Dimes was huge in the war on polio.

    I think it is healthy for any organization to be closely questioned regarding how they spend their funds. I think it is an excellent thing for you and and all of us to do. Where the JDRF critics and I part ways is, I have looked at how they spend the funds and am satisfied in how it is spent and what JDRF is doing, and the critics are not. I think I thanked people for WHERE EVER their donations were made. I DO think we should be grateful to researchers whether we give them money or whether they are funded by sources we don't necessarily approve of, because ultimately, I believe it will be all the research knowledge combined, that will lead to advances. Sometimes you have to find out what DOESN"T work before you can find what does...You know? Like a toddler learning to walk, they try, they fall, they fall again, they fail time and time again, but ultimately they learn what works and what doesnt. Maybe it isnt a great analogy but you know what I mean.

    So, question, question away. I guess I have been having a hard time though, because the questions sound more like accusations and imply a charge of wrongdoing, or an imputation of guilt or blame. And I do not understand that, other than the fact that a cure has not been found yet, and to me the fact that a cure has not been found yet points back to the researchers that have been funded. Unless someone can prove that the money that JDRF has given to research over the years was NOT used for research, but was used for some unauthorized purpose, then I think that the funds used by JDRF FOR research were well spent...whether or NOT those results were what ultimately will be the cure.

    I for one, want to hold on to the hope that there will be a cure, and I have been really disheartened by the thought that there will not be one. Since no one can say for sure whether there will be a cure or not, I choose to believe there WILL be. To me, that is what faith is, believing in something unknown, and I choose faith.

    I am sorry for my misunderstandings and for hurting anyone and for not being better able to explain my thoughts..oh, and also for the plethora of run on sentences and lack of apostrophe's and bad spelling...Sorry people, really. :(
    I am trying to figure this stuff out just like everyone else. :eek:
     
  9. sooz

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    I appreciate your faith in my intelligence and perhaps if I had another lifetime to learn all that I would need to know to be able to find a cure, I would be able to participate in a part of the research that is needed. But I can tell you without a doubt, that I do NOT have the knowledge to evaluate complex medical/research issues. I do not have the education to do so, and I do not have the time to do so, and I do not have the resources to do so. I can read something and think, oh that sounds promising, but as we have been made aware of, promising really means nothing. Nothing promising has paid off yet, and surely some of it was promising, right? It can't ALL have been worthless. I want people who DO have the education, the knowledge, the resources, the time, and the professional expertise to evaluate what is promising. That is just me. For those that do feel they have the resources to evaluate complex research, how wonderful! I am grateful to you for your ability to do what I cannot.
     
  10. Jeff

    Jeff Founder, CWD

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    In an effort to keep this thread on point, I've soft deleted (basically turned off) posts that I thought were unnecessarily argumentative and not contributing to the discussion.

    I do believe that this is a healthy discussion, but I also want it to remain polite.
     

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