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Bag of Hope … For Adults?

I’ve always thought Rufus was pretty cute, so when the JDRF link for their Bag of Hope flew by in my Facebook feed, I clicked.  (Rufus is my clickbait.)

According to the website, the Bag of Hope includes (but isn’t limited to):

  • Rufus Comes Home, A First Book for Understanding Diabetes, reference books
  • A JDRF DVD
  • An ACCU-CHEK® Nano SmartView blood glucose meter
  • Informational postcard about the support Lilly Diabetes offers families with a bookmark
  • Lilly Diabetes literature on severe hypoglycemia management
  • A Novo Nordisk key chain Webkey with details on the NovoPen Echo® reusable insulin pen
  • A Novo Nordisk postcard with information on T1D support from novologreach.com
  • A Road ID bracelet for Rufus, as well as a discount coupon for a Road ID bracelet for your child
  • Dexcom® continuous glucose monitor educational brochure and water bottle

I don’t know if the Bag of Hope was a thing when I was diagnosed in 1986, but the fact that they exist now is awesome.  I love this.  I love the thought that a family dealing with a diabetes diagnosis has proof of life after diagnosis, right there in a bag.  It helps connect people to the JDRF, but most importantly, it helps connect people with people.

But if there’s anything we’ve learned in the last 30 years, it’s that type 1 diabetes diagnoses are not limited to kids.  Adults are being diagnosed with type 1 diabetes.  Adults are living with diabetes.  And they still need a good dose of hope here and there, too.

The JDRF has their T1D Care Kit, which is awesome, a PWD can dream, rightt?  What would I stick in a Bag of Hope for Adults with T1D?

Here’s my wishlist [note: already being edited]:

I’m fueled by a bunch of bias with these selections, and I know I’m missing a bunch of things that, once I hit “post,” I’ll have to go back and add to the list, but this is my starter list.

What would you want to see included in an outreach bag for adults with type 1 diabetes?

 

14 Comments Post a comment
  1. Rufus is now a build-a-bear and he has a bracelet made by RoadId. We ordered one a few months ago for my 2nd oldest daughter (my oldest was diagnosed 2008, I was diagnosed 2012). Interesting the differences between 2008 and 2014!

    I like your adult toolkit contents especially the tallygear, but it could also have a Sugar Medical Supply bag. How about a big hammer to go with the One Lump or Two?

    It would be great to have your book. 🙂

    09/5/14; 11:06 am
    • That is awesome about Rufus. I think he’s adorable. And Sugar Medical Supply bags would also be cool. I’m adding them to the mental list. 🙂

      09/5/14; 1:33 pm
  2. I think we are never too old for Rufus so I think it would be awesome if he was in the bag. Your book for sure. Maybe Rufus could be wearing a YCDT bracelet? A list of in person (area specific) and online support networks. A way to share that it is okay to find your own way – you don’t have to have a pump (or a certain type of pump) just because your doctor wants to you. Some people are perfectly happy on syringes or pens and that is just fine. A way to help them navigate insurance. Maybe the doctor prescribed a certain type of test strip because that is what he always prescribes but those a second tier. The newly diagnosed person doesn’t know that there are other options and that there are ways to make this very expensive disease a little cheaper. I think most of it comes down to figuring out how to tell them about what they don’t know that they don’t know.

    09/5/14; 1:38 pm
    • “A way to share that it is okay to find your own way …” I love this sentiment. YES. Not everyone needs to pump or use a CGM or engage in social media. To each their own, and I’d love to see that sentiment pushed to the forefront.

      09/5/14; 1:40 pm
  3. Kerri, I don’t know how to write something like this, but how about something that helps the newly diagnosed explain their diabetes to family, friends, and co-workers? Something beyond just the clinical description. That was one of the hardest things for me, and I didn’t get good at it until many, many years later. I think of those interactions then as so many wasted opportunities.

    And absolutely Balancing Diabetes.

    09/5/14; 3:46 pm
  4. Lauren #

    This is something I’ve been thinking about a lot recently. I was diagnosed as a teenager – 15 years ago – and even if as an adult I can appreciate Rufus, my teenage self certainly wouldn’t have. My older brother was also diagnosed as a teenager – and Rufus would have made him simply angry. I would love to come up with some kind of kit like this for the angry/confused tween to teen set. Have you seen anything out there that I haven’t yet?
    Or is this still missing from the PWD world?

    09/5/14; 10:40 pm
  5. Any book that Will Dubois has written.

    09/5/14; 11:20 pm
  6. Andrew Dyke #

    For those on MDI: a BD Safe-Clip Device
    This little device clips the end off used needles so they no longer present a threat.
    Fits in the bag with the kit, about the size of a finger pricker.
    Much better than a sharps box.

    09/6/14; 6:52 am
  7. Wow, super comprehensive list. As a adult diagnosed with type 1, i would love to get this!

    09/6/14; 7:21 am
  8. How about a puppy? No matter how bad the news may be… how much someone may dread the diagnosis of T1D… everyone is happy when they get a puppy.

    Come to think of it, all I ever wanted in 1981, both before and after diagnosis, was a puppy. And I never got one. 🙁

    09/6/14; 10:51 pm
  9. I hadn’t even heard of the NovoPen Echo until we got the toolkit!

    09/8/14; 12:29 am
  10. Also, Lilly makes a “practice” glucagon shot, that would be nice to have.

    09/8/14; 12:30 am
  11. Great post, Kerri.

    After reading this, I reached out to JDRF to follow-up on the one I’d written in April 2013 and see where things stood on the “Adult Bag of Hope” front. As mentioned last spring, JDRF National had planned to expand the DOC info inside but hadn’t decided what to include; for whatever reason, that never happened by end of 2013 as we were told by Andrea Hulke (who’s no longer with JDRF national). Here’s what JDRF’s Christopher Rucas says now:

    “We currently do not have any plans to add new resources to the Adult T1D Care Kit (I referred to it as a toolkit), however we are actively working to reach out to a select number of bloggers (as well as corporate partners and HCPs) to help educate the newly diagnosed T1D adult community about our resources and eagerness to provide the Care Kits. As you know our chapters are active in working in their community to provide the kits, but we would like to widen the reach.

    I checked with my colleagues… The T1D Care Kit has been a successful resource and we want it to remain a ‘tool’ newly diagnosed adults will use. There is not a specific reason we have not incorporated new resources to the Kit, but given its success we want to continue to look at opportunities to enhance the Kit and collaborate on ways to ensure it remains a valuable tool for the newly diagnosed Adult T1D community.

    Regarding the Bag of Hope, we understand local chapters personalize it. We do not have a national policy, but encourage our chapters provide consistent materials and resources to all.”

    So, there’s that. So, hopefully those “select number of bloggers” can advocate for including more, and some of these items as mentioned above. And we can also encourage our HCPs to do the same, referring to your blog post here as a great resource (which JDRF is aware of, we’re told).

    – Mike

    09/10/14; 10:41 am
  12. Olivia #

    When I was diagnosed seven years ago at age nine I got one of those. It was the exact same blue backpack, which I used for years and only recently threw away because it got moldy. Bleh. I got Rufus and his book and bracelet (I was so skinny the bracelet actually fit me at the time, and I wore that until I got my own) , a One Touch meter (not that one, a different one I don’t remember the name of…), a JDRF watch that I still have (despite the dead battery), the Pink Panther book, two different flavors of glucose tabs (Btw, those suckers last forever. I didn’t eat them for years and only finished the watermelon ones this year.), a Calorie King book, and some yellow BG logs with stickers that I never actually finished filling out because the more “grown up” ones Mom printed worked better.

    Wooo, so many parentheses.

    10/20/14; 4:02 am

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