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Hunting for Adult Type 1s

Discussion in 'Adults with Type 1' started by MHoskins2179, May 21, 2010.

  1. MHoskins2179

    MHoskins2179 Approved members

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    I'm reaching out to those Adult Type 1s. Mainly, what involvement do you have with the JDRF and what perceptions do you have about the organization? How relevant is it to your adult D-Life, versus what families and children get out of it? We are working in Indiana to get more adults involved, to provide something more relevant to their lives. Part of that means connecting with them and finding out maybe why they no longer see the JDRF as relevant to them. Please let me know what thoughts you have on this topic. There are some bloggers out there who've written about this topic recently, and many have commented that this type of outreach needs to mirrored in more places... What do you think?
     
    Last edited: May 21, 2010
  2. Shutterflymomma

    Shutterflymomma Approved members

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    I still follow JDRF updates and newsletters, and trust them MUCH more than I trust ADA with information PERTINENT to me. I used to volunteer during my youth years with ADA, but never have volunteered with JDRF. It's not that I don't want to, and don't really have any reasons other than I just haven't. Kids, life, struggling with no insurance and no job to stay alive and on the pump, LOL... they just all got me busy so that I stopped pursuing these things. I've never been one to participate in walks and the such... I loathe crowds and am not an overly sociable person. But if there were need for volunteers to maybe be a "Big Brother/Sister" type thing to children recently diagnosed and their families, that's something that I would probably get involved in.
     
  3. alleliz

    alleliz Approved members

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    I was diagnosed when I was 24 years old, so I was never a child with diabetes. Thus, I don't feel like JDRF exists to support someone like me. I think that being newly diagnosed as an adult can be a very confusing, lonely place because you simply do not get the same support that families of newly diagnosed children receive. I mean this from both educational and emotional standpoints. Instead, you're left trying to explain to people that somehow you were able to "get" Juvenile Diabetes as an adult.
     
  4. Mistync991

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    the jdrf in our area has recently started up more adult support groups and outings ...havent been to any but i get emails about them ;)
     
  5. Shutterflymomma

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    alleliz-My Mom was diagnosed with T1 as an adult, and you're right. Especially given that her dad was T2, it was sometimes difficult in her later years for people to understand that she was diagnosed until she was in her 30's. BUT, back when we were diagnosed (late 80's early 90's), there really wasn't the whole "Type 1, Type 2" thing. You were either insulin dependent or non-insulin dependent. So in that time, I was diagnosed with Juvenile Diabetes, and Mom was diagnosed with insulin dependent diabetes. But yeah... you're right, it's hard for people to comprehend that someone diagnosed into their 20's and 30's with T1 really do have "Juvenile Diabetes". But please, JDRF really is soooooo much better than "everyone else!". Give them a chance :) I have absolutely ZERO trust in the ADA, but JDRF has always kept me VERY well informed of the newest trends in treatment and research!
     
  6. Danielle2008

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    I share the same feelings.

    While I do enjoy the Walks, when it comes to the rest of their programs, there is not much out there for those older then 18.

    I will say, I have been highly impressed by the ADA's new Adult Type 1 program that offers get togethers every so often.
     
  7. lilituc

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    Our local JDRF seems to have their major focus on children, despite having the highest rate of Type 1 in the nation. I would love to see more events and support groups for adults.
     
  8. TheFormerLantusFiend

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    I haven't seen anything of JDRF that I really wanted to get involved in, or even much that I was eligible to get involved in. I was two months shy of 18 at dx. I don't want to give them money... as far as I see, that ends the relationship.
     
  9. MHoskins2179

    MHoskins2179 Approved members

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    JDRF Fundraising

    Thanks everyone for your feedback so far! It seems that we all have that common theme in mind about the JDRF - that it's fundraising focused and doesn't offer much more than that. I'm hoping to setup some adult network here in the Central Indiana area at least, maybe putting some D-Meetups together for some adults who are living with Type 1. As far as fundraising, I agree on those points... the only thing that gets me to contribute anything is the fact that the organization is such a key player in things like CGMs and better BG meters, not to mention things like the artificial pancreas project. It all goes to a cure, and in the meantime to better management tools.
     
  10. Ellen

    Ellen Senior Member

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    Hi - I saw the word "hunting" and thought of Dick Cheney:p
     
  11. diabetesgurl

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    JDRF vs ADA

    It's funny I came across this post... i'm in the process of reading James S. Hirsch's "Cheating Destiny: Living with Diabetes, America's Biggest Epidemic" and I just finished reading a bit on ADA vs JDRF (at least in their respective start outs)... I highly recommend the book, it's fantastic - and after meeting the author last weekend, I admire him that much more.

    I was always a ADA kid (even being diagnosed at age 10). I've been to their Call to Congress 3x, was on the commitee at a young age for their annual diabetes walk, as well as with the tour de cure and assorted other diabetes events in the area.

    With the JDRF, their focus was so much on a cure and alot less on the people living with it everyday. I found that the ADA had programs for families and people with diabetes and provided support as well as fundraising efforts towards a cure.

    I also found that the JDRF didn't exactly want us Juvenile Diabetics anymore after we turned 18. I got the impression that we were no longer a good face for the disease because we didn't recieve as much sympathy. Meanwhile, the ADA was there and still is there with open arms reguardless of my age.

    All a matter of opinion, but i've seen great things done with both associations, they're both there to make a difference and do better - so there's nothing wrong with that. My preference still stands with the ADA though.

    - Kristen
     

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