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The Juvenile Diabetes Cure Alliance

Discussion in 'Advocacy' started by Nick Masercola, Sep 7, 2011.

  1. Nick Masercola

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    Hey everybody,

    My name is Nick Masercola, and I'm one of the Associate Editors for the Juvenile Diabetes Cure Alliance. We're a new non-profit organization with the goal of finding a practical cure for type 1 diabetes by 2025. Long story short: We were formed after extensive analysis of the charitable diabetic universe and finding out that NONE of the major charities allocated their funds in a way that maximized the chances of finding a cure.

    We don't accept donations, and are funded entirely by our founder. Our goal is simply to get these organizations to change their habits, and put funds towards the most promising projects for a cure.

    That's a short and sweet explanation, but I will be posting significantly more information in the coming days. We want to make people aware of our presence and our goals, and to start interacting with the people we're trying to help.

    Thanks for reading,
    Nick
     
  2. carbz

    carbz Banned

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    Nick,

    Why not set the goal for 2015? Thirteen years is way too long for me being comming up to 46. Right now I'd give the edge to Dr Faustman because she's looking to not only reverse the core of the disease but to do it in an inexpensive manor. I understand first things first and they have to figure out a solution that is safe and effective but if its too expensive to mass produce it may never see the light of day. Like any business these issues can not be overlooked. For example lets say a car manufacturer had to sell a new bare bones car for at least $50k to make a profit. If that were the case knowing their buyers would be few and far between would it be worth the time, effort and cost to set up shop? Probably not. As much as I think a cure or better treatment may be realistic eventually they really need to consider the reality of cost to make it happen. Thats why my interest was more towards Smart Insulin then anything else. We'll see what the future brings.
     
  3. Nick Masercola

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    Well, as for why the organization hasn't set the goal for 2015, it's pretty simple: Generally FDA testing takes 7-15 years to go through, and there is simply nothing in the pipeline that looks as if it could have the results we want and be mass produced within that time period.

    Also, regarding what you say about the issues of cost, that's one major problem facing a lot of possible medicine. For instance, a few days ago a drug was discovered that may be able to re-grow beta cells. It's in extremely early stages, and may someday be a promising cure, but one of the big things mentioned was that it's an INCREDIBLY costly medicine to produce ( I'll find the article shortly and post it here). Hopefully whatever comes out will be affordable to every diabetic, but who knows?

    Also, if you want to know more about us, you can visit our website, but I'm not sure if I'm allowed to post it here ( may or may not violate forum rules). It's under my about me if interested.
     
  4. carbz

    carbz Banned

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    From my understanding when Banting and Best discovered insulin they sold the rights to manufacture it for basically nothing because they knew it would save lives. It wasn't about a business or making money. They wanted to help people. Now unfortunately the cost of research is extremely expensive and many research companies end up closing shop because they can't get funding to continue. Anything that gets discovered most likely will have to get licensed to a big pharmaceutical company whose only interest is really to sell the product for profit. Not to help people get better. If you have seen "Rise to the Planet of the Apes" and payed attention to the CEO of the company you know what I mean. To be honest paying for diabetic supplies for 36 years now I feel I shouldn't have to pay a cent for a future treatment. I think the only thing in our favor is because so many people have diabetes the market is clearly there for any discovery to cash in. I think some form of transplantation is likely the best chance of working but I think its gonna be unrealistic to most due to cost. As a community I think something like glucose responsive insulin would be a great breakthrough though still not remotely a cure. Our best hope though probably a long shot is Dr Faustman.
     
  5. Nick Masercola

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    Yes, there has certainly been a large turnaround in the way the medical profession works. When the discovery of the polio vaccine was made by Jonas Salk, he was basically offered the chance to become a multi-millionaire if he charged people for it. Of course ( in one of the most generous acts I can think of) he gave it out for free, saving tons of lives and all but eradicating the disease in the U.S.

    Obviously that was then, this is now, and people are going to want money for whatever cure may be developed. However, we want the cure ( whatever it may be) to be for everyone. After all, a cure that only the richest can afford isn't so much of a cure, is it?

    Hopefully wherever the answer comes from, people will have the kindness and virtue to put life-saving benefits above cold hard cash.
     
  6. emm142

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    JMO, but I think that even a cure which hardly anyone could afford would be a massive step in the right direction. Once an expensive method which works has been discovered, it seems like a much smaller step to find a cheaper way of doing the same thing.

    (Of course, this requires that there is still funding after the initial, expensive cure has been found.)

    Personally I'm holding out more hope in an AP than a cure, but obviously a cure would be preferable. Thanks for posting. :)
     
  7. carbz

    carbz Banned

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    In my mind the AP will never work if they use traditional insulin unless they incorporate a way to release glucose as well. It will be a cumbersome expensive piece of machinery and not something I'd have any interest in. I think Smart Insulin is much more realistic if Merck would get off their A** and do something with it already.
     
  8. Deal

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    Thanks for posting Nick. It's an interesting idea to try and target donation dollars towards particular research as a 3rd party. Are there examples of this working in other research areas?

    It would be nice to be able to target research money with strings attached to the resulting research making any findings that 'we' paid for 'our' property. That way we could keep the associated costs of the resulting advances down. I don't like paying for the research and also giving the company that got that money total control of any resulting patents.
     
  9. Nick Masercola

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    To Emm:

    Yeah, a ton of people are very interested to see where exactly the Artificial Pancreas goes ( ourselves included). Even if not a true cure, any positive news with it is a MASSIVE leap in the right direction.

    To Deal:
    So far, it hasn't been done too much in the realm of diabetes, which is why we're interested in pursuing it.

    In addition, regarding your comment on wishing that the company who creates this cure doesn't own the patent, that's actually an interesting point that so far I've never seen someone bring up in a discussion. If the people fund a cure, why is the company entitled to own it?

    I have no idea how to answer that question. On the one hand, the people who fund a project definitely deserve some ownership, but the people who committed to the research do as well, and I'm not sure there's any easy answer for that.

    Also, thank you to everyone to their response, there's been some good discussion going on here.
     
  10. Nick Masercola

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    Also, we have recently posted a new publication entitled " Myths Surrounding a Type 1 Cure" on our website. If interested, follow the link posted under my ABOUT ME.
     

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