THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Friday, February 4, 2011

I Have A(nother) Question!

Deep breath.

Let's all just take a minute to regroup.

WHEW!  Apparently I missed quite a firestorm over the past few days!!!  The reaction to this letter seems to have ignited some passionate emotions.  To be honest, I'm glad I missed it.

So I'm not going to comment on it...the firestorm, that is.

Instead I'd like to add my 2 cents about what wasn't in that letter.

For me, it all comes down to this statement:
We have a responsibility and an opportunity to help them live better, healthier, longer, and less stressful lives. And so one of the big changes that we’re undergoing is focusing on improving the lives of people living with diabetes on a day-to-day basis.
Okay.

Sounds good to me.

I'm all for it!

I'd like to know how (and if) this *international* organization plans to help people with Type 1 Diabetes who are living in conditions that make it nearly impossible to access insulin.  I'd venture to say that (and correct me if I'm wrong) assisting these individuals to access the insulin they need to survive would go a long way towards "improving their life".

So I'm curious...DOES JDRF have any programs in place?  HAVE they done anything to financially support organizations such as Life For A Child?  I honestly don't know, but I'd hate to think that anyone was cherry picking about whose life they're committed to improving...and whose they aren't.  I mean all this chatter about "cures" and "improved technology" is awesome...but...insulin has been around for nearly 100 years.  If these people can't access the basic life sustaining tool to keep them alive, then how on earth would they ever be able to benefit from the rest?

And, if there's not....consider this post as my hand being raised to volunteer for the opportunity.  I'll figure out a way to bridge the gap.  I'll do anything I can to support an effort to assist the global community.  You can count on me.

Hey...we all have special skills.  Some dive into research, others have a knack for communicating with legislators, still others may be a power house when it comes to cooperate fundraising.  Well, I take care of people.  It's my passion.  That's just what I do.

So I'm bringing it to the floor and asking the DOC.

I'm not on a witch hunt.  I'd like to gather some facts about this particular issue.  I found this list on my local chapter's website, but it doesn't seem to answer what I'm looking for.  I've e-mailed the national JDRF office, but haven't gotten a response yet.  Hey, and Mr. Brewer, if you stumble upon this post, I'd love some input straight from you!

It's my goal to come away from this post with lots of warm, fuzzy stories about this awesome organization and their efforts to contribute to the solution of an ever-growing crisis that exists within the global Type 1 Community.

So speak up!  I'm listening :)

PS -- If you have some input, but would rather not leave a comment, please e-mail me at candyheartsblog@gmail.com.

From My Candy Heart To Yours,
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7 comments:

  1. I missed the firestorm too, but reading everyone's comments about it sure has opened my eyes to some issues I wasn't aware of or really hadn't thought about. I'm learning so much from the DOC.

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  2. That's a great question Wendy.

    With my own daughter included as part of the "global" T1 community I know firsthand that some of the technological advancements being pushed forward by JDRF funding will do absolutely nothing for the T1 children here in my country (Ghana, W. Africa). I once approached JDRF about allowing Alexandra to be an international delegate at the JDRF Congress. They told me that they have international delegates, but only from JDRF "affiliates." I took that to mean a "significant fund raising entity within the country." Ghanaians hardly have money for insulin, so forget about fundraising for the JDRF.

    Life for a Child is a brilliant concept, but too narrow in scope. There are 54 countries within the African continent, only about a dozen are included in their program. And the fact is (yes, sad fact) the majority of children with T1 in sub-Saharan Africa will die within their first year. I believe that JDRF could do so much more.

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  3. This very issue has been on my mind and in my heart lately. I was also thinking about PIH on this front. I don't know if they have a program to get out life-sustaining insulin to third world countries. I think they are more infection control-related. I have never thought of JDRF in the capacity in which you write about here, but now I am.

    Please update us when you get a response. It better not be *crickets*...even if they don't do anything on that front, some response is better than ignoring your inquiry.

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  4. I too am very interested in knowing if something will be done to help those without access to the most basic things. I'm all for everyone having access to better technologies but honestly, I can't focus on that while knowing others don't get insulin. It seems so wrong.

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  5. That a girl Wendy changing the world to better T1's everywhere. GOOD LUCK!! and I'm very interested in what you find. I wish that I have some kind of information for you or could offer some sort of help.

    Unfortunately I don't think that this is only a T1 and JDRF issue I think it affects all people and children with any disease in 3rd world countries. If there is no profit being made the companies just don't care to take the time and look at the issue. It really is disgusting!! and it needs to change!! NOW

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  6. I thought about that when I wrote my "Cure" post yesterday. I pointed out that 88 years ago there was a mother (many mothers AND fathers) that considered insulin their cure. Well the fact of the matter is.... there are still mothers and fathers CURRENTLY in these other countries that consider it a cure. Because it would mean saving the life of their children. Children that without it will and ARE dying.

    So sad.

    GREAT post, Wendy! I agree that the focus to these people is just as important as our current quest for a "cure".

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  7. Great post and a GREAT question. I would love to know the answer, too. Thank you so much for asking this very important question that has been troubling my heart as well. I will be very interested to see what the response is...

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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.