OK, let's face it, the JDRF is the biggest and most influential organization advocating for T1's. But they're still calling themselves the "Juvenile Diabetes Research Foundation" - even though that term is now widely acknowledged to be inaccurate, misleading, or worse. If they're advocating on behalf of us, why are they still contributing to the problem of misinformation and widespread ignorance on the differences between Type 1 and Type 2??? It just pisses me off.
Having worked for a nonprofit that went through several name changes and suffered for it, I get that there are certain risks to the organization with "branding" and whatnot. But in this case, the name of the organization is itself undermining its mission statement - and that is a real problem, a potentially dangerous one even.
like in many posts... diabetes is the name that causes the most problems. Type 1 and Type 2 are stupid distinctions as well when the diseases are so very different. I'm not worried about the adjectives so much as the noun. I'm not sure who is capable of changing this... but it must be done.
How is the term Juvenile Diabetes inaccurate? Type 1 Diabetes is named juvenile daibetes because in about 95% of cases you are under the age of 18 when you are diagnosed. Type 2 is known as Adult onset because again 95% of cases you are over 18, actually the majority af cases are diagnosed in their 30's and up. I dont think these terms are inaccurate, so much as the distinction between them are not clear to the public. Yes type 1 diabetes can affect adults, and those of use who have will become adults, but we still have Type 1 diabetes aka "juvenile" diabetes. Its that distinction that allows a lot of people to know that we are insulin dependant. Almost everyone knows that juvenile diabetes is insulin dependant where adult oset is not. I dont feel their name contributs to any miscpceptions about the differences between the types of diabetes. how do you think it does?
I am an employee of a big company, and so I get to see first hand a lot of things that "are" but do not make a lot of sense. I believe that changing a name of a big company costs signicficant money, and takes significant effort, and adds no value to the company. I would leave the name be, rather than defer support to research.
I can agree with you that calling it Juvenile Diabetes can be frustrating: many people think that it "goes away" when you are not a juvenile anymore, or you can't contract T1 if you are not a juvenile (look at even OUR boards) "I was 31 when I was diagnosed and I was shocked because....."
My final opinion: changing the name will also not help one single bit with misunderstandings, misconceptions, and the whole lot. If you don't inject insulin you will simply never understand. That's at least 80-90 percent of all people everywhere. There will always be hoards of uneducated people smacking the regular coke out of your shaking hypoglycemic hands because "DIABETICS CANT HAVE SUGAR". ungh. Fortunately, we have each other =)
They keep the "Juvenile" part of the name becaus they want to focus to be on children. They want to focus on children because people don't feel sorry for diabetic adults. Most people believe that "juvenile" diabetes goes away when you reach adulthood, and if you have diabetes as an adult, it's your own fault. The JDRF has told me that they want people to think of children when they fundraise.
They also spread a lot of only partially truthful, dramatic-sounding information about diabetes because they want to shock people. They will tell everyone that shots and blood tests are horribly painful, which I think scares a lot of people and could do a lot of damage to diabetic children, but that is part of their fundraising. The sadder they sound, the more money they raise.
Personally, the J does not bother me at all. I do agree with Joe that it costs a lot of money and effort to change a company name. And that money can be used for research instead of taking a J out of name. It is all in your preference I think just like when people don't like to be called diabetic they want to be called a person living with diabetes.
I do not think that the JDRF is contributing to the problem at all. In fact, as we speak (or type I should say) The developers and JDRF are working hard on creating a resource room for Juvenation to help educate people with diabetes as well as their peers, loved ones, co-workers etc. and it will be equipped with downloadable materials that you can print out and give to people to make them understand what we go through or just informing them about type 1 diabetes. And much more.. I believe it is launching this week so keep a look out for the announcement!
I agree with Xa... and it can be a little offensive to us who have type 1 diabetes who aren't "juvenile". Yes, we all know that the disease used to be only associated with juveniles, but I think today, people need to know that kids aren't the only ones who can have type 1 (like me, who was diagnosed at 43). Although I might be on the extreme end of the disease age, a large number of us were diagnosed AFTER the age of 18, and to continue referring to it as "juvenile" is a misnomer that needs to be changed. I know that the JDRF wants to continue differentiating itself from the ADA (which focuses a large amount of its effort to those with type 2), so what about something less paradigm-shifting like "Diabetes Research Foundation (DRF)" and just dropping the "Juvenile" part of it with a campaign showing the faces of type 1 diabetes, including a full range of adults... just my 2 cents but thanks for allowing me to share it. Thanks, David
I was also diagnosed later at age 25. I think that the JDRF does understand how people feel about the "juvenile" part of it because this website was geared toward young adults living with type 1 diabetes. I really think they are trying and have been moving their focuses toward adults living with diabetes as well as children.
I might have no right to say anything because I grew up dealing with this..but personally, I couldn't care less about it being called the "Juvenile Diabetes Research Foundation".
When I explain I have diabetes, I usually say "I have Type 1 diabetes, juvenile diabetes"(I rarely ever mention how old I was when I was diagnosed unless introducing myself as a diabetic like on here). For me, it's helped people realize(for the most part), that it wasn't something I brought on myself and I have to take shots..as oppose to what people know of diabetes which is "adult-onset" more often than not. Even though I am only in my early 20's..it helps a lot to be able to associate it with the "Juvenile Diabetes Research Foundation".
When I just say "I have diabetes" or "I have type 1 diabetes" people think that I have adult-onset and I've done this to myself, I don't have to take shots and I can cure myself. People associate "Diabetes" with "Type 2" and "Juvenile Diabetes" with "Type 1".
And to be brutally honest..JDRF is for the kids and easing their "suffering". They are here to keep the younger generations from having to deal what we are dealing with now. We're adults..we are seen as being able to handle this because we're suppose to be responsible and whatnot. Kids aren't seen like that, they are seen as needing to be carefree and not being brought down by the fact they have to take shots and be careful about what they eat, etc. People are more sympathetic to kids who have to "suffer" with diabetes, then adults who are more prone to being able to deal with the crap life throws them. No one's going to donate if they drop the kid stuff, face the facts. You're an adult, you're meant to be able to deal with this and that's not appealing to people when they are trying to figure how who to donate money to.
I'd actually end up being offended if they changed the name. It's about the ONLY thing that makes people able to recognize the difference. And no offense, but I don't want to be associated with Type 2 diabetes in anyway..and without the "juvenile" in my "script" when I tell people I have diabetes..I usually am associated with Type 2 and end up spending WAY more time than I have or want to spend, having to explain the difference.
And don't expect the media to help educate people.
I tend to agree with you Gina. As a very late bloomer to T1, I'm grateful to the JDRF for all they do and face it, I'm still just a baby in this new world so I don't much mind the connection at all! Though I do admit that the parents seem to be surprised when I attend events locally as they expect me to be there with a child. So the education goes both ways.
BTW: I love the resource room! I can't wait to see your day in the life! I am sure it will be an inspiration for all of us! It would be nice to show a day in the life of both a pumper and non pumper. Have we considered doing both? Sometimes I wonder if I'm doing this right or not!
I think we should leave the name JDRF alone. People will not get educated because of a name change and it won't do anything for me personally either. The only people getting educated are the ones who take the time to do it. I have just come to accept the fact that most people don't know the difference, and really, they don't care. It's too much information for most.
I don't even think type 1 and type 2 should share the name "diabetes", but that's another subject.
After I read Mary Tyler Moore's latest book, I wondered why adult T1 diabetics aren't invited to go in front of Congress with her as well as kids. Then it dawned on me...... If I were to go in front of Congress, the outcome may not be the same. They would see a healthy adult T1 and perhaps say to themselves "it doesnt' look that bad, she looks pretty healthy after living with T1 for so long (40 years), maybe it's not that bad". We all know differently, but to the people who are uneducated about diabetes, they see what they see upfront, not what happens behind the scenes and all of the effort it takes to stay healthy, nor do they really care.
Have you ever had anyone say "well you don't look sick"? That is a big sign of ignorance. I'll take the time to explain if my listener wishes to hear, but most times I don't. I do not want anyone feeling sorry for me... pity parties are not part of my life with D.
I respectfully disagree with you, Rainbow. I don't think the JDRF spreads partially truthful information. The JDRF does a lot for people like us. Over the years the contributions by JDRF to the world of type 1 has been incredible.
I don't see anything the JDRF has done for me. I've asked for their help in finding funding for an insulin pump, only to be rejected because I am not a child. I've tried to volunteer for them, only to be rejected because I am, again, not a child nor a parent of a child. I attended their "Juvenile Diabetes Support Group" only to be informed that I was not welcome at a diabetes support group because I actually have diabetes rather than being the parent of a child with diabetes.
They tell everyone that insulin shots are HORRIBLE TERRIBLE AWFUL PAINFUL things and that it's TORTURE to have to suffer through insulin shots every day. This frightens people and I've heard people say "If I ever get diagnosed with diabetes, I'd rather DIE than have to endure those awful shots!" They say the same things about finger pokes, leading many diabetics I know to refuse to test their blood sugar because people say it hurts, when actually you barely feel the finger pokes.
By using this site you contradict your first sentence. In what capacity would you like to volunteer, Rainbow? I would like to try and assist you. I'm not sure what support group you attended exactly, but I wouldn't rely on the people in that one. Maybe you could start your own group - work with your local chapter - they can assist you by pointing other interested people in your direction. Send me a private message if you would like - I look forward to connecting additionally. Sincerely,
I don't see anything the JDRF has done for me. I've asked for their help in finding funding for an insulin pump, only to be rejected because I am not a child. I've tried to volunteer for them, only to be rejected because I am, again, not a child nor a parent of a child. I attended their "Juvenile Diabetes Support Group" only to be informed that I was not welcome at a diabetes support group because I actually have diabetes rather than being the parent of a child with diabetes.
They tell everyone that insulin shots are HORRIBLE TERRIBLE AWFUL PAINFUL things and that it's TORTURE to have to suffer through insulin shots every day. This frightens people and I've heard people say "If I ever get diagnosed with diabetes, I'd rather DIE than have to endure those awful shots!" They say the same things about finger pokes, leading many diabetics I know to refuse to test their blood sugar because people say it hurts, when actually you barely feel the finger pokes.
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I'm sorry to hear you've had such a terrible experience. For most of us, JDRF has been a wonderful resource for support and a place to connect with others. Have you tried recently to reach out to other local support groups? Have you been able to contact anyone in your area through Juvenation that might be able to help you find support groups or volunteer experiences? Hopefully Juvenation has been a better experience for you. For me, personally, I've found Juvenation to be a fantastic place to make friends and talk with others about life with diabetes.
Hopefully you are able to find here the kind of resources you are looking for. Even though we may not be in your local area, I hope you can find friends here to talk to! Good luck to you :o) I hope things turn around for you.