Wednesday, October 03, 2007

A Strange Question

I was speaking to another mother of a child with D today about Walk of Hope. I had invited her daughter to come out and walk as well as to be included in my Faces of Hope presentation. I didn't even ask for a donation because I knew they participated in a JDRF walk.

She said she had never heard of The Iacocca Foundation. I wasn't surprised. I'm sure plenty of people haven't. So, I gave her the whole spiel I usually do. It was founded by Lee Iacocca whose wife died at the age of 57 from complications brought on by Type 1 diabetes, and so on and so forth.

Then, she asked, "So does all of the money from The Iacocca Foundation go just to the children too?"

Huh?

I think I just stood there a second. I didn't really know what to say.

I said, "Well, it goes to research to find a cure for Type 1 diabetes."

Then she said, "I know that all of JDRF's money goes to the kids. And, the ADA usually gives their money to adults."

I said, "Well, the money given to The Iacocca Foundation goes to research to find a cure for kids and adults with Type 1 diabetes."

I didn't know what else to say. She said, "That's nice." And, that was the end of our conversation.

As I was walking to my car I was thinking, "All of the money goes to the kids? What does that mean?"

Then, I remembered a comment I had read on tudiabetes by someone (an adult with Type 1) who said she went to a local JDRF meeting and was told that it was just for the parents of kids with Type 1. She was saying that she didn't support JDRF because all they care about is the children with Type 1 and their parents. At the time I didn't think much of it.

But, now, I'm just befuddled. How can the money just go to kids? If they find a cure are they only going to let the kids have access to it? Do they think that once someone reaches adulthood their D just disappears? Do they think only kids develop Type 1?

I've never thought of Type 1 as a kid's disease. Kids grow up to be adults, adults with Type 1 diabetes. It would be great if they outgrew it, but they don't.

There is enough division between Type 1 and Type 2 diabetes. Do we really need to break Type 1 into sub-categories?

Sorry, the question just blew my mind. I'd love to hear other people's thoughts on what she said.

9 comments:

Nicole P said...

Take it from a professional fundraiser, Penny, in the world of raising money, "The money goes to the kids," resonates more than "The money helps to fund research around type 1 diabetes."

Once, when I was around 20, someone asked me "When will you outgrow your diabetes - adults don't have it do they?" This was before the days of lots of type 2 information being around - back then adults got "the sugar" but they didn't *HAVE* diabetes. Even now, as an adult with type 1, I often feel like the invisible part of this disease. Commercials feature children or 80 year olds, fundraising features smiling or frowning children's faces or a vast array of older adult faces - but no one to whom I can relate. No 34 year old, with a pump at her hip. No 30 year old with complications looming... Nothing that talks about the challeges and lives of - or that features the issues that - adults with type 1 in the diabetes community face. I think lots of people probably still think you can outgrow type 1 - or they just assume when you grow up it "turns into" type 2, or they assume that adults ONLY get type 2 to begin with - discounting the years that we've already spent living with the d.

Oi. It's a challenge - to be sure. But I think the faces of bloggers and people on diabetes networking sites is starting to change it.

Sara said...

I replied on tu diabetes - but I guess now they must be regretting calling it juvenile diabetes, huh? :)
That's why people like me diagnosed at age 21 are mis-treated as Type 2s before we go into DKA and they realize we are not producing any insulin - oops!

I agree though - a cute kid is going to raise a lot more money than I am :)

Shannon said...

I think she asked a strange question too.

In my mind, when organizations raise money to find a cure, I automatically think it's for all Type 1 diabetics no matter what their age. I've never even thought to make a distinction.

Rachel... said...

I'm a little wary of the Iacocca Foundation myself. It's only rated 1 star (out of four) on Charity Navigator. If you take a look there, it shows that they have 2.75 million that's just sitting there doing nothing. That may be one hurdle you may be encountering. I think it has a great potential to power research, but right now, it's sketchy to me.

Rich said...

Penny,
Let me hazard a guess on where such confusion may come from. I have heard T1's complain that too large a portion of the ADA's efforts are focused on T2 (which in some people's minds equate to adults). In contrast, JDRF is focused on T1 (J=Juvenile=kids). Therefore one might simplify and say "all of JDRF's money goes to the kids".
And certainly, as some have indicated, your son and my daughter are both cuter than Wilford Brimley. ;-) So a good fundraiser at JDRF will focus on the kids. And while JDRF is good about admitting that they have overhead and fundrasing expenses, many people think "ALL" the money goes to research for (T1's) "the kids".
I have no real knowledge of where the confusion comes from, but there is my guess.

Donna said...

Penny,
The motorcycle ride my husband & I went on a few weeks ago was to benefit the Iacocca Foundation, too. Cool!

When I was growing up, type 1 was always called juvenile diabetes. I think a lot of that terminology is still sticking around today. And I think it confuses a lot of people.

But the person you were talking to should have realized that Lee Iacocca's WIFE was not a child. Kinda weird how people think, isn't it?

Jamie said...

This is a prime example of where I think the two diseases should have different names. They are different, but people don't know that. You can get T1 as an adult, but people don't know that. Kids get Diabetes and they think you fed them chocolate as babies. People getting diagnosed with T1 in their 20's and 30's are automatically assumed to have T2 -even by their doctors.

So much confusion out there - and so much educating needs to be done. It's all so frustrating.

T1 isn't all about the kids, but JDRF uses them to get their research money. They plaster the faces of all those little ones on their posters, pamplets, magazines to tug at people's hearts. But, when those little ones grow up - they still have the disease - and it's still T1.

We support the JDRF mainly because it's going to T1 research and while people are thinking "kids" - it's going to help everyone with T1 - adults included :) Cause someday my Dani will be a grown up too - and I hope that (with all my heart) she doesn't have to live with it anymore at that point.

Wouldn't that be nice? (one can only hope, I suppose)

I applaud you for taking on this fundraiser again this year Penny. Keep at it - it's all for a good cause.

Amylia said...

I think Nicole hit the nail on the head, so to speak. Can I just say "ditto"?

And I do think JDRF conjures up images of kids, while the ADA does a lot with T2 diabetes, so I can see where the lady gets her idea from. I've come to understand quite "literal" thinking which often lacks some analytical/criticcal thinking skills after living in Taiwan for a year.

Anonymous said...

If JDRF helps find a cure for Type 1 Diabetes, it will benefit all Type 1s, not just the children. For fundraising purposes, the younger the child the better, IMO! A toddler or infant will garner more sympathy than a 13 or 15 year old. If you want to donate money to a worthwhile organization where literally all of the money goes to fund research, please donate to the Diabetes Research Institute in Miami. They are doing amazing research on fixing the autoimmune process for Type 1 Diabetes as well as islet cell transplants without immunosuppresant drugs, stem cell therapy/cure, you name it, they are doing it. I believe this organization is well on its way to a viable therapy or cure. Please remember them when donating funds.