What has JDRF done for you?

It's not a dead horse though. And I don' think the thread was intended to start a debate. I'm sorry if you've taken it that way. And actually, I have learned what other JDRF chapters are doing which I had NEVER heard before, and I have seen things and links to things JDRF was doing that I have never seen before. So, yes, it has been educational. I don't have my mind made up one way or the other on JDRF. I still have a vested interest in JDRF. I have donated to them and I expect my donations to be used towards research. I have never said that I will not be supporting JDRF. They still support research which I am following very closely. Considering that, I think I'm allowed to express dismay with the organization. They work for me. They work for all of us who have walked and sold things and had lemonade stands. All the children and adults. They work for us. So, no, I am certainly not persuading donations elsewhere. I have never done that. I have always supported JDRF, ADA and DRI - I think they all do things in different ways and for different reasons.

Unlike you, I do not think that they are making the best decisions they could be making. That's opinion. And you're right, none of us here really know.

 

So, by your book any dissenting voices, any voice that represent a critical assessment of the status quo is obligated to, "move along"? Sorry, not in my world.

 

here is an article on what happened with JDRF and Faustman.

reading it now, it still leaves a bad taste in my mouth.
http://www.diabeteshealth.com/read/2005/05/01/4126/why-did-the-jdrf-try-to-discredit-cure-research/

Don't know if Faustman is right either but it's just one instance where JDRF hasn't done what I would have liked to see them do.

 

This has been a healthy discussion. I am hoping we can steer this topic to an end while things have remained respectful. Quite frankly, we don't need a Faustman discussion in yet another thread. This happens more often than is productive. This thread is about JDRF.

Now, maybe it would be appropriate to create a separate thread about all the positive contributions Faustman has achieved mixed perhaps with skepticism that might exist about her research. But it doesn't need to be a "JDRF is good and Faustman is bad" or "DRI is good and Faustman is bad" or "ADA is good and Faustman is bad"... because, quite frankly. just the opposite sometimes happens by a very few with sentiments against JDRF.

So, might I suggest we continue the positives or concerns with JDRF... or bring the topic to a peaceful close.

 

What happened with JDRF and Dr. Faustman is what started people looking deaper into JDRF. It is important to this thread. While discussing Dr. Faustman alone wouldn't be, the relationship between JDRF and Dr. Faustman is an important one. :cwds:

 

gosh I don't think we need ANOTHER faustman thread. do we? I like the lady..but seesh. Down in the "research forum" those get heated. Very heated. I stay out. LOL. I don't think this thread is going Faustman is good/JDRF is bad. It was mentioned, and I clarified what had happened as I knew it, as simply an indicator of one reason why people might be upset with JDRF. Which..also wasn't the original intent of the thread. at all. It was...what have the done? and what would we like to see.

It is an important marker in the place where many did start looking more critically at JDRF. I give you that. So in that regard, it falls into the thread in that there is research which I think is valuable (from a parent standpoint) which JDRF isn't supporting. There may be other such research. They don't support a lot of things. They can't possibly support everything.

 

I don't think anyone is looking for drama. The fact is, JDRFs treatment of Faustman caused a serious fracture within the community. To deny that that influences, even today, many people's perception of the organization is... unwise.

 

All I'm saying is this thread is titled, "What has JDRF done for you?" It has been productive.

 

I agree. I think it's safe to say that Faustman has been an issue and we can probably leave it at that and continue on.

 

Well, to be fair, quite a bit of my concern with JDRF is because of how they handled Faustman and how they decide who gets funded. It has been quite a while since there has been a Faustman/JDRF thread in the Parents section, and it wouldn't shock me to learn that there are a large number of posters on here who don't know anything about that little tiff, and would find the information quite important when they're coming to a decision as to how they personally feel about JDRF.

That being said, I think the article that Michelle is a decent summary of the issue. BUT I don't want to shut down discussion of the topic if there are newbies (or oldies) who don't know anything about it. Not everyone has been posting here since 2006 (like you) or 2007 (like me).

 

um ... I mean ... er ... yes. Why ***** and moan about something that's not helping instead of doing something that you think does?

Am I missing something?

Am I the only person who thinks it's odd people post negatively in this 15 page thread how JDRF has failed them instead of actually posing in a separate thread on how they might actually do something to help their child differently than what JDRF is doing now?

Here's an idea ... start one and then, from that, start that organization - quit bitching and do something.

EDIT: Here's a suggestion: What I am going to do for me.

 

Well, it's pretty clear to me that JDRF is reading this board. And if they see enough "bitching" then it may...just may cause them to do something different than they are doing now. Or if they read enough people saying positive things, they'll be assured that they are on the right track. Because perhaps, PERHAPS it would be easier and more efficient to "right the ship" at JDRF than to compete with its, um, fund-raising power by starting our own organization as you so helpfully suggest.

Really, I don't get why you are so intent on shutting this thread down. Again, if you're tired of reading the "bitching", stop reading. I don't get why you are trying to derail the thread. It's almost like you're picking a fight, which was humming along just fine. I mean, post away if you have something to say that's relevant to the question posed, but your "Stop Bitching" mantra isn't really useful.

 

In fairness, Karla's first post in this thread (she did start the thread) went into things she would like to see JDRF do in addition to asking what JDRF has done. I think this might all fall under that umbrella. No? So this kind of is.."that thread".

 

Some of the first threads I saw on this forum were huge, long, emotional threads about how much people loved JDRF, there were many of them and they went on for days, I'm sure a search would bring them up.

 

I felt like I couldn't contribute to this thread because we have not walked, our biggest contribution are a sneaker or two when asked at a local store.

From day one I have been doing the D thing the best way I know how. I keep my son as healthy and happy all while living with a chronic disease (not illness, he is not ill). We fight this D (like you all do) every minute of everyday. I am so exhausted that most days, walking for a "cure" isn't even on my radar.

So what has JDRF done for us?? Other then Rufus, which Manning hugs every night (not because he is a D bear but he is the perfect size) NOTHING - 0. But then I have not walked...

I always thought, I will walk soon... I was being a slacker but felt other D families were taking up that slack and one day I would repay them.

I really didn't see JDRF as finding the cure, I saw my fellow D families as the cure searchers. I applaud each and every one of them and am sadden that JDRF can't or wont continue to help walk the walk.
:cwds:

 

lil'Man'sMom
You wrote a wonderful reply. Any large organization runs into issues, it always seems to happen with increase in size, no matter what the group. But I do believe that JDRF is interested in both a "cure" and an "almost" cure. They are not doing only one or the other. They are working on prevention, current help for those living with the disease, and cures for those newly and long time diagnosed with the disease. Happily there are lots of organizations working on T1 so everyone is able to send their dollars where they want. I want all the different orgs to be working on cures, help for complications, help with technology.Ali

 

In a weird Twighlight Zone sort of way, the JDRF has given me hope.

Hope that a lot of people are looking for a cure. With all the passion in their hearts.

I'm not a scientist, so I don't know what might be the best road. But I know there's the JDRF doing what it can, while there are also others who are trying hard to find one.

That gives me hope. Even if I'm jaded and, after 26 years, don't believe I'll see one in my lifetime. Just as my mom, diagnosed as a kid 53 years ago, doesn't believe she'll see one while she's alive.

Maybe it's just faith (another irony).

There's some intangible hope in that it's happening and will happen someday, by someone - and the JDRF has supplied me with that hope, even during the times I didn't see anything from them and felt more like a marketing tool or exploited face or charitable check on the charity's register.

I'm not the parent of a CWD, so I can't possibly imagine what it's like to look into the face of your child and try to tell them a cure will come - when you doubt the truth of that statement. Or their faces when they cry for a cure and you can't take diabetes away or say when a cure might be found.

But I was that kid. My parents always basically told me, during my pre-teen years: "The JDRF is trying, but they just don't know when. Other scientists are trying, but they don't know either. We'll get a cure, and until that happens, you'll be healthy. Your dad and I will make sure of it."

I'm sure there are many research ideas and various funding paths, but I'm not qualified to know about that. When it comes to what the JDRF has done for me: they're trying the best they can. I think as a layperson, and as someone who they are doing this all for, that provides me comfort.

Regardless of whether I understand all the decision-making and annual report confusion or not... I'll leave the rest to people much smarter than me.

 

This is what I find so disturbing about this thread. The fact is, JDRF IS funding research and IS pursuing a cure. For anyone to think that a cure is going to come "from fellow D families as the cure searchers" is so misguided. As was stated in an earlier post JDRF makes decisions on what research to contribute to after careful consideration and scientific judgements. The kind of anti JDRF rhetoric that has been on the board lately is influencing people who have never been involved with JDRF and know nothing about JDRF to decide that because some vocal critics don't think much of JDRF, then therefore JDRF "can't or won't continue to help." That is just so wrong on so many levels. The cure is NOT going to come from fellow D families...it is going to come from researchers and scientist working year after year, amassing data and doing studies and evaluating what works and what doesnt, what might work and what doesn't, what works on mice but doesn't work on humans, on and on and on, year after year. For us to lose heart just because it hasn't happened yet is heartbreaking to me. JDRF IS funding that research, and JDRF IS giving hope. To discount the men and women who have worked so long and faithfully on our behalf is so ungrateful. It can't be easy for any researcher to work on a cure for so long and so hard for it still to be so elusive. Can we give some credit to the people that are working year after year? That is what JDRF has done for me. It funds research that, while it has not produced a cure YET, and may never produce a cure, is actively pursuing a cure. Whether you like JDRF as an organization or don't like it, for whatever personal reasons you have, JDRF IS working on behalf of everyone with D whether you have ever given a penny or walked a step on their behalf. If you have given money to any organization that is honestly funding real research I thank you, because your hard earned money is going to help my granddaughter some day. And I hope that the money and time that I give to JDRF will someday help your loved one. Why does one have to be bad and the others good? Why can't they all be appreciated for the work they do?

 

Michael: Nice post. Thank you for not giving up hope.

 

Very nice post. I hope this brings us back to topic.