17 Responses

  1. Scott
    Scott February 26, 2010 at 7:37 am | | Reply

    Amy, I agree that JDRF is coming to terms with the fact that the cute d-kids from Children’s Congress eventually grow up, but their disease doesn’t go away simply because they’ve become adults. I asked the DRI to address transitioning from childhood to adulthood in their conferences, and from what I understand, those have been among the most popular sessions, proving what we already knew — more and organizations need to address the adults with type 1 audience. However, I also agree that there’s still plenty of room to grow. Personally, I would like to see JDRF have an “Adult Congress” where adults can address before our Congressional members challenges we face with insurance, etc. that children don’t really even have to deal with, which might make the conversation a bit different — maybe that’s something the Diabetes Advocates?!

  2. tmana
    tmana February 26, 2010 at 9:29 am | | Reply

    The issue I see is one of marketing and revenue. The more you can keep a reader on your own site/pages, the more views your advertisers will receive, and the greater value they perceive in maintaining that relationship. Also, the more value visitors find in your community, the more likely they are to remain loyal to your brand, to purchase your products, and/or to be generous to you come donations time (either overall or in relation to someone else’s brand). This is why so many mainstream diabetes brands (organizations, manufacturers, and vendors alike) have developed their own discussion fora and online communities in the past year or two, and why many contractor and staff agreements include wording that prohibits linking to outside organizations in the same general field of interest, or (in some cases) even mentioning them at all on one’s site or in one’s literature.

  3. Doug
    Doug February 26, 2010 at 9:40 am | | Reply

    It looked like a rehash of existing info from other JDRF presentations/sources. JDRF knows that its the cute kids stories/pictures that get people to open the wallet. Thats the reason for the single minded focus on the kids. 4 or so years ago I was in a JDRF marketing/media meeting here and it became clear that the only focus was on Kids. I tried to explain they were likely overlooking adult type1s that could donate. Didn’t seem to matter. The organization seems to completely misunderstand the web and what it can do and isn’t interested in learning. I tried for years to help and recently gave up when the Exec Director locally changed, the new ED is clueless.

  4. Kassie
    Kassie February 26, 2010 at 10:06 am | | Reply

    just requested a copy. Trying not to be too cynical ;) I recently had someone semi-argue with me that I *must* have type 2 diabetes because type 1 is just kids. So, every step forward is a help, I guess! I’ll be watching JDRFs efforts and hope this is just the start.

  5. Michael Hoskins
    Michael Hoskins February 26, 2010 at 10:33 am | | Reply

    Amy: I’m on the same page as you are. Being diagnosed at age 5, I’m now 31 – proof indeed that D-kids “grow up.” It just doesn’t seem like there’s adequate support out there for longtime Type 1 Adults. Unless I’m newly diagnosed, there isn’t anything much that applies to me – JDRF isn’t offering this, and it brings up a gap between what the ADA offers that’s typically more focused on Type 2 and newly-diagnosed adults. As you say in the post, the Diabetes Online Community and the various organic support spots are where I’m finding the most benefit, in Living With Type 1 Diabetes Since Childhood. Exactly right that the JDRF is marketing the small kids and parents’ stories to tap into wallets, but in doing so without being mindful of the “growing up” factor they are also missing so many incredible opportunities to re-engage this grown up population.

  6. June S.
    June S. February 26, 2010 at 10:36 am | | Reply

    I support the JDRF (more than I do the ADA) because my endocrinologist explained to me that their research projects benefit Type I diabetics (of all ages) better than the ADA’s do.

    However, I have always felt insulted that the JDRF seems to forget that children and adolescents diagnosed with Type I become adults, and that we still need recognition. My heart breaks for little children (especially) who are diagnosed with Type I, because for the first 16 years of life I had a blissful, non-diabetic life (birthday parties with cake and Halloween with candy, etc., etc.) Nonetheless, we adults with Type I need some TLC, too!

  7. riva
    riva February 26, 2010 at 12:00 pm | | Reply

    I say bring back the idea of diabetes camps for type 1 adults. While we may not need anyone to show us how to inject or count carbs, it sure would be fun and a great way to feel solidarity as we are truly the invisible. riva

  8. Lauren
    Lauren February 27, 2010 at 3:45 am | | Reply

    A classmate of mine asked me why my “juvenile diabetes” didn’t “go away” once I became an adult. I had to explain, while she looked at me skeptically, that I was diagnosed with type 1 in my twenties, and sadly it doesn’t go away. The response: “Then isn’t it type 2?” At that point I remembered why I have given up explaining …

    There are a ton of misconceptions out there, which continue to shock me 3 years out from my diagnosis.

  9. Stephanie Jewett, RN, MBA
    Stephanie Jewett, RN, MBA February 27, 2010 at 5:39 am | | Reply

    Good post – there is a lot of confusion regarding Type 1 and Type 2 – any information and education for everyone is just a plus. I recently posted a blog article regarding Type 2. Stephanie

  10. Rachel
    Rachel February 27, 2010 at 7:22 am | | Reply

    I’m in Perth, Western Australia and was diagnosed last year when I was 18. I was too old for the children’s hospital and all the fun camps they held so was kind of lost as to where to go for support. I did a lot of research and one of the places I contacted was JDRF. They were really great here and sent me one of the packs mentioned above (all the info and merchandise really helped me because I was newly diagnosed at the time). But I did notice that a lot of their services were geared for young children so I was still needing somewhere for support. In the end, my diabetes educator pushed me to start my own group because there was just nothing out there for people of my age group. So she got me in touch with 2 other guys in a similar situation and we started a group (YWAIT) and judging by the response (we now have 60 members from 18 -~35 y/o’s), there really is a need for support groups/networks out there for adults (newly diagnosed and old timers) to get together, discuss stuff, have fun and just generally socialise. So I definitely hear what you’re all saying and it sounds like it’s a similar situation here in Australia too.

    As far as camps for adults go, to celebrate YWAIT’s first birthday we’ve organised a weekend away down south next month! If it’s worth the airfare, you guys are more than welcome to come ;)

  11. Kim
    Kim February 27, 2010 at 7:33 am | | Reply

    I received the Toolkit yesterday. It is a good start. I would still like to see them highlight someone who was older than 21 at diagnosis, and would love to see some mention that while 50% are diagnosed after the age of 18, many are diagnosed in their 30s, 40s, 50s, and beyond. Too many older adults are misdiagnosed as Type 2 simply due to their age and spend months on therapies that do not work before finally being prescribed insulin. I was diagnosed at age 49, fortunately correctly, but had a very hard time finding any information for newly diagnosed middle aged Type 1s, even from the ADA and JDRF.

  12. Kathy
    Kathy February 27, 2010 at 10:28 pm | | Reply

    Pretty much what I expected, although I applaud their initial efforts. There is still no connection with the reality of adult t1s who have lived with it since childhood. And I second the comment about the complete omission of the online community. Without you all I would still feel alone!

  13. Melitta
    Melitta February 28, 2010 at 4:47 pm | | Reply

    Overall, I think JDRF’s new ToolKit for Adult Type 1s is very good. There are a few inaccuracies (adult onset Type 1 is actually two to three times more common than childhood onset T1, based on all scientific studies that use the gold standard antibody testing for diagnosis) and most of the pictures are of adults who were diagnosed as children, but it’s a good start! Although this might be a bit overwhelming for someone just diagnosed, there is lots of good information to help someone transition to the new life they face. I am grateful that JDRF is acknowledging us now, in a positive way.

  14. James Madsen
    James Madsen March 3, 2010 at 4:41 pm | | Reply

    Awesome post! Thanks so much for creating Adult Type1 kit as it will positively affect so many lives!


  15. Rebecca
    Rebecca March 5, 2010 at 7:14 am | | Reply

    For those looking for help transitioning from the world of juvenile type 1 to adult type 1 diabetes DECA (diabetes education and camping association) actually started last year holding weekend long diabetes retreats for young adults. These D-TREAT’s are specifically aimed at 18-25 year olds transitioning from their pediatric care to a world where they have to worry about insurance issues, job issues, drinking, drugs, finding a new primary care provider, etc. I went to the first retreat last year and it was very valuable. They are having two this year, one in MA and one in CA. You can get more info here:

  16. ChanceOfPregnancy
    ChanceOfPregnancy September 20, 2010 at 12:04 pm | | Reply

    This kit will benefit so many people. Congratulations

  17. Acting Like an Adult at a Juvenile Event « Typical Type 1

    [...] the night continued, I started to feel more and more of the JDRF alienation that I’ve heard so many adults with Type 1 talk about. At one point, after four or five [...]

Leave a Reply