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The Time Has Come…

August 21, 2007

About three months ago, I came up with the idea of having a conference for just for adults with type 1 diabetes. A conference for a group of people who are marginalized because they are neither the majority nor children. A conference for a group of people who are dealing with diabetes burnout because they’ve been poking and prodding their bodies for ten, twenty, thirty years. A conference for a group of people who have their own unique fears about life. A conference for a group of people who aren’t talked about and feel isolated – but are not alone.

Most conferences are currently geared towards all types of diabetes. They discuss complications and they discuss healthy eating. They discuss schools and sports. These are all important things to talk about, but I felt that there were some unique challenges to a life as an adult with type 1 diabetes that never got addressed at the conferences I attended. Things that I wonder about. Explaining my insulin pump on a first date (or tenth?). Having a baby. Changing jobs and dealing with a whole new set of annoying questions. Fighting an insurance company to let me test more than 8 times a day or give me that continuous glucose monitor or finding a new doctor that doesn’t patronize me. Going low during sex. When I’m burned the fuck out after my 25,000th blood glucose test.

And this is just what I’ve come up with.

So I sent out an email to a small collection of adults with type 1 diabetes in my address book to find out if they thought this was a good idea. Most of the people, obviously, gave an enthusiastic yes!

Since that time, we’ve had a couple of discussions about what the conference would be like and now we’re looking to get your input and suggestions. With the help of Kelly Close and her team at Close Concerns, we have created an interest study to determine who and what you would like to see at a conference. Right now we’re just trying to answer some basic questions, but hopefully, if all goes well, I will back over the next few months to tell you more.

Also, we’re holding a contest for the name of this future conference. The person who creates the name that is eventually chosen by the planning committee will receive a copy of Know Your Numbers by Amy Tenderich and Dr. Richard Jackson. Two runner-ups will receive a Six Until Me mug or a Diabetes Mine mug (donated by Kerri and Amy, respectively).

We are trying to gather as much input as possible, so please send this to everyone you know, put it on any message board, and please blog about it! The survey will close on Friday, September 7, which gives everyone about two and a half weeks to complete it (it really should take you about ten minutes… and five of that will probably go to just the conference name question!).

Adults with Type 1 Conference Interest Survey

If you have any questions regarding the conference, please email me.

Really, tell everyone.

27 Comments
  1. August 21, 2007 8:45 PM

    Awesome.

    I’ll light the signal torch!

  2. August 21, 2007 6:57 PM

    Bravo, Allison! I just highlighted this (literally) at the top of my Weekly Nuggets section.

  3. August 21, 2007 7:48 PM

    Fabulous! Although I don’t comment too often, I love reading your blog, it’s more education for me!!!

  4. August 21, 2007 10:14 PM

    Great job Allison

    I’ve just blogged about it.

    I know it’s a pain. But if you ever redo that survey can you add a section with comments. I really think that all surveys should include a general comments section in case someone has ideas/thoughts that aren’t covered in the survey.

  5. Allison permalink*
    August 21, 2007 10:18 PM

    Bernard,

    This is not the end-all be-all survey. If everything goes according to my evil, er, master plan, then I’ll be back in a few weeks asking for even more input. And of course, there is always email! This is actually just to see if there is enough interest to move forward with this or if this is just some crazy talk.

  6. August 21, 2007 10:56 PM

    What a fantastic idea- I can look into this further but am not aware of anything just for type 1s. I do co-manage a website called http://www.diabeticmommy.com as far as pg planning and support- I am also a diabetes educator (though not “certified” yet) and a type 1 of 15+ years…

  7. Ivan Cohen permalink
    August 21, 2007 11:18 PM

    The best person to contact about possibly providing quality material for your conference is Dr. R. Bernstein in NY. (A T1 who is healthy at 74!) Check out his new book Dr, Bernstein’s Diabetes Solution (2007 ed.)& you’ll see what I mean.

  8. August 22, 2007 7:44 AM

    I love the idea. I think that sometimes Type 1 adults fall off the edge of the world! There are either children with Type 1 or adults with Type 2. What about us???? :)

  9. August 23, 2007 7:18 AM

    What a great idea! Would it be an international conference or just a national (American) one then?

    I live in Europe (currently Denmark), but very much enjoy the exchange of experience and ideas between the diabetics of the OC. A conference would be a great opportunity not only to meet fellow bloggers, but also to gain inputs from other people living and/or working with T1 diabetes. So even if such a conference was to take place in the US, if it was international, I believe I would do whatever I could to be able to attend :-)

  10. Allison permalink*
    August 23, 2007 9:27 AM

    Heidi: This conference is open to anyone who wants to come. I’m not sure what makes a conference international (having international speakers?) but diabetes is pretty much the same anywhere so I can’t see why you couldn’t come and have a good time!

  11. Krystal permalink
    August 23, 2007 10:52 AM

    PLEASE! I know like a thousand people who would consider going! (slight exaggeration). You could send invitations to Type 1’s and doctors, etc, all over the world. I think that would make it international, and possibly increase your speakers.

    I definitely support the international idea. If you make it annual and its a success, it will have international visitors anyway, if not this year- the next. I think this is something people are really looking for!

  12. August 24, 2007 1:39 AM

    hey there thanks Allison i love your post (as always). Bernard we added a comment section – you were so right! any other changes just let me know. 120 people have responded so far – please keep the blogs highlighting the link so that we’ll get as much information as possible – thanks mightily!

  13. Anne Jackson permalink
    August 24, 2007 11:25 AM

    I think it’s a great idea, I would definitely go.

    I’m glad I found your blog!

    Anne J. (Type I since 1986, on Insulin Pump for approx. 8 years)

  14. Carrie Licciardi permalink
    August 24, 2007 12:39 PM

    Would love to see a conference on Adult diabetes – 1.5

  15. BetterCell permalink
    August 24, 2007 4:23 PM

    Hi Allison….I submitted my form to Kelly yesterday for the conference.
    Any idea when it will be held?
    I think that it would be good to transcribe the contents of the conference and make sure that everyone in R&D, Pharmaceuticals, Medical Schools, Endo Societies, Hospital Divisions/(Endocrinology) are made aware of the needs and input of people w/T1DM.
    Too often WE are overlooked in favor of that other Disease…………………..
    IRD(aka Type 2 Diabetes).
    Probably because less $$ for all to be made from US and more Intelligence is required from Caregivers which is an exception to the existing course.

  16. August 26, 2007 5:19 PM

    great idea! count me in, and let me know how i can help.

  17. Charlie Goodspeed permalink
    August 28, 2007 11:28 AM

    Great idea. I would guess the great folks at the Joslin Center in Boston would help in some way. PM me if you need a contact there-

  18. August 28, 2007 12:03 PM

    I think this is a great idea!! Can’t wait to hear more details :)

    http://pancreaticallychallenged.blogspot.com

  19. August 28, 2007 2:57 PM

    Great idea. Just make sure its in Hawaii :-)

  20. Anon permalink
    August 29, 2007 9:41 PM

    Yes, adults with type 1 diabetes are certainly more invisible than the others mentioned. How about a session or two for the spouses and/or children of people with type 1? Although we can never know how it feels to ride the rollercoaster of fluctuating sugar levels, diabetes impacts us, too.

  21. Allison permalink*
    August 30, 2007 12:33 AM

    Dear Anon: I sure hope we can do a session for spouses! It’s definitely on my to-do list.

  22. Patricia permalink
    August 31, 2007 7:51 PM

    This is a fantastic idea! I would love to come, spouse in hand! (He’s helped me for 20 years!).

  23. Mark Reitkopp permalink
    September 1, 2007 6:35 AM

    Just discovered your blog today, and as an adult with Type 1, I am quite interested. Originally from the US, and quite active in the Minnesota ADA chapter, I have been living in Israel for 25 years. Because of this, I strongly agree with other bloggers that an international approach should also be taken regarding the issues of diabetes we all face. Diabetes does not have any borders.

  24. September 1, 2007 11:39 PM

    Allison, I have been under a rock for a few weeks and just discovered this. Wow! Wonderful idea.

  25. September 6, 2007 12:38 AM

    I waited so long to respond b/c I figured I could not be part since the conference will take place in the US! Right?

  26. Allison permalink*
    September 6, 2007 9:33 AM

    Chrissie,

    The conference will take place in the US but that *doesn’t* mean international people can’t come! CWD has people from all around the world coming to theirs, and ours will be similar in that way.

  27. Carol permalink
    September 6, 2007 10:14 AM

    Allison,
    Great idea! Type 1 diabetic for 39 years–burnout for sure! I would love to come. PS
    I would leave out the “f” word in your correspondence.

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