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Participating in JDRF's Type 1 Talk.

When I arrived at the JDRF Type 1 Talk event in NYC, joining Aaron Kowalski (JDRF's Assistant VP for Treatment Therapies), Lorraine Stiehl (JDRF's National Chair of Grassroots Advocacy), Dick Insel (JDRF's Chief Scientific Officer), and Rachel Steinhardt (JDRF's National Director of Marketing and Communications) on the panel, I realized that I was the only person who wasn't directly tied to the JDRF organization.  Honestly, I felt a little like the wild card.  

So why was I there?  In short:  to represent our community as best I could.   

We had Rachel from the JDRF marketing side, Dick and Aaron from the research side, Lorraine from the advocacy Side, and then me, representing … well, the "plain ol' people with diabetes" side.  I wasn't there for the JDRF.  They were my gracious hosts, and I'm thankful that they thought of my voice (and my incessant cough) for this event, but I'm not their mouthpiece.  For me, our diabetes community comes first, and all organizations come second.  

Many of the questions were aimed at research efforts, including cure efforts and the Artificial Pancreas Project, and Rachel shared many of the resources that the JDRF has available to the community.  And I listened attentively to their answers, and contributed as I saw fit - you can watch the video for the nitty gritty details. But I can't claim to know all the nuances of what they were talking about.  There were a lot of moments of silence from me because I didn't have much to say in terms of research and government advocacy.  But I still said my piece, and wanted to bring the discussion back to helping the community as much as possible.  And I felt like I was listened to, and actually HEARD.  Big organizations care what we, as a community, have to say, and just the thought of that respect makes me so proud of what we've created. 


Type 1 Talk, and World Diabetes Day (and Diabetes Month, for that matter), opened my eyes to a few of the problems, on a diabetes awareness level.  Here are the top three that kept coming up for me:

  • Sure, we wore blue and tested in tandem on Sunday, but we can't help but be aware of diabetes.  We live with it every day.  What about the people who aren't in the diabetes community?  I want to find ways to burst the diabetes bubble.  I know we're all blogging and listening to one another, but how are we stepping outside of the D-OC comfort zone and educating the people who truly don't have a clue?  How do we make diabetes less of an invisible disease and more part of the information mainstream?

  • Also, I know that there is a lot of focus on children with type 1 diabetes, but thankfully many children with type 1 diabetes grow up.  And we become adults with type 1 diabetes.  The adults with type 1 community is getting a bigger piece of the representation pie - like the adults with diabetes sessions that are being added to Friends for Life, and the adults with type 1 toolkit on the JDRF site - and this progress is thanks, in large part, to our passionate diabetes blogging community.  Adults with type 1 deserve, and are now beginning to have, a real voice in these organizations. 

  • And thirdly, I feel that there needs to be more support for the extended diabetes community, namely the caregivers of people with diabetes.  Whether you're the spouse of a diabetic (love you, Chris), or the parent of one, or the best friend of one, you ARE part of this community and you need support as well.  Someone quotes a statistic that there are almost three million people living with type 1 diabetes in the United States.  To me, that number of people in our community swells exponentially when I think about everyone who loves that one person with diabetes.  Our community is bigger than we realize, and for those living closely with diabetics, they deserve some resources of their own to lean on.
They asked for closing statements, and I hope I represented the community with mine:

"Just because we make diabetes look easy, it's not.  And just because we make it seem like it's something we can live with and we can have this big, full life - which we can, but at the same time, it can be very challenging.  I think the one thing that I want to leave us with is that just because we don't look sick, doesn't mean we don't still deserve a cure."

I think this event was a great way to get some discussions going, not only within organizations themselves, but with the diabetes community as a whole. Thanks to everyone who took the time to tune in, and thanks to the JDRF for hosting this event!

Full disclosure: The JDRF paid my travel and lodging, but did not compensate me for speaking. My opinions weren't paid for, per usual. :)

Comments

I'd say you DID represent the community with that final thought. Definitely.

As for the "diabetes bubble," it's something I think about all the time. I believe the DOC is an invaluable resource for all of us, but sometimes I wonder if it's not too much of an echo chamber when it comes to raising awareness among non-diabetics.

You have a good speak Kerri. I think many of us if asked to do the same speech would have pretty well said the same thing in a nutshell. Diabetes is a hidden disease, that from the outside we look "normal/healthy" - but inside - it's constant turmoil as our internal organs battle it out. In the line of work I do, as a diabetic mentor, we've got a long way to go in educating both diabetics themselves and others. For example, I'm currently helping a gal of T1 30+ years to transition over to Lantus and educate her own Endo on this. Then you get folks that we met on the street - that don't know one thing about diabetes (WDD was an example that I'm going to be blogging about today).
Anyway, I guess because I'm a newbie to the D-OC that many of Americans D's are so heavily involved in since I tend to work outside of the group (always been an outsider ). It's whatever works for us to carry on our quest to bring awareness in whatever way we can best!

Your closing statement made the tears flow. You said so much in those few sentences. Thank you for that.

I have been thinking about this a lot lately. How to break that bubble. I wish I had a good answer. All of my ideas are CRAZY!

I think that your three observations are spot-on. and I love your closing words. As a friend to a mom with a diabetic child, I am learning everyday that diabetes is bigger than it looks on the surface, and just because she maintains a smooth family life doesn't mean that it is easy. I really admire and respect the energy it takes to do that.

I was thinking about that bubble just the other day, especially after D-Blog day. That day was an overall bad day for me, and all those blogs got me through it, but then what about the next day? I was emailing a friend this weekend who I hadn't talked to lately, so I sent my link from that day to her. She thanked me so much for sharing it with her, and said she not only read that one, but lots of others and is learning so much about diabetes that she never knew before (and I've known her for at least half my life). My conclusion is that breaking the bubble comes one person at a time.

You did a great job. Thank you for representing the community and for including caregivers within it. I loved your closing statement and you made it with such emphasis, I felt it resonated.

I love your blog. I gives me hope for the future for my 6 year old daughter. She talks about having kids and making me a greadma and I know she can because of you.
Thanks for the shout out about the caregivers. This one needed that today.

Kerri, you did such a terrific job representing our community. You were a huge bright spot in the talk, in my opinion. I agree, there is a lot more advocating and bursting through we need to do - I don't know exactly how we can go about it but I know I'm ready and willing to give it my all.

I'm a multiple-year lurker on this blog, and I don't have diabetes. The only person in my family who does is a semi-distant cousin. I am a healthcare worker and interested in nutrition and read blogs by people with eating disorders, cystic fibrosis, and autism. I guess I have no real advice to offer, except to say that you may be reaching more people than you know. You've definitely opened my eyes to several issues and struggles that you have faced. So, I guess this isn't very useful except to say hello and say that no, everybody who reads your blog doesn't have diabetes:)

Kerri, you are sneaking into my conversations with family & friends all the time now. And you don't even know it. Well until now. I was just talking to my Mom tonight about how making it look easy isn't always in our best interest.

A few of my co-workers heard me on the phone with my insurance company today and told me it really opened their eyes. My refill for my test strips was "denied" Friday evening. I had about 15 strips for the whole weekend. It was kind of stressful and completely unnecessary since it was a lack of communication that caused it. After I told the lady at teh insurance company that this was my life they were playing fast & loose with, I saw it dawn on several people that I wasn't exaggerating at all.

I'm all for bursting diabetic bubbles. I just don't know where to start. Ideas? Thoughts? Anyone? :)

Thanks for this recap, Kerri! It was great to be on the same panel with you. As a JDRF volunteer, I can tell you that the organization does indeed care deeply about what you and the rest of the DOC have to say. Hopefully we can work together to continue to make sure that JDRF addresses the key issues/problems moving forward. Thanks again!

Thanks for this, Kerri. Thank you for advocating with such passion.

I did step out of the bubble...I guest posted over at Jules GF Flour. I wanted to bring to light that about 10% of the T1 population have celiac -- and then dispel some common myths.

It would be awesome if you (and any of your readers!) could take a moment to leave a comment...breaking out of the bubble felt a little strange, but I see how it's necessary to turn the whole world BLUE!!!!

Thanks :)

http://blog.julesglutenfree.com/?p=374

Hope your gluten-free baby is doing well!

Thanks so much for the recap, Kerri -- and for speaking so eloquently on behalf of this community.

Your closing statement just brought me to tears.

You did the D-OC proud.

Thank you for representing us, the T1 Diabetics in an honest, open format. I have been T1 Diabetic for over 40 years. I have been told many times how 'easy' I make it look. The last year has been a struggle with bouncing blood sugars. I know the average person doesn't understand that their beta cells compensate for stress, hormone imbalance, illness, etc., while we must adjust our insulin levels up and down for these changes. It's not only about eating right. It is about learning how our individual bodies react in every situation. Life changes, and so do we.

Thank you so much for your advocacy and for giving me something to think about nearly every day.

Kerri, you did a fabulous job, and I'd choose no other to represent for us.

It would be really eye opening if EVERYONE, all 3-million of us, got a chance to show the world a slice of our lives.

I really identify with what Briley said. Breaking the bubble comes one person at a time. We need to tell our stories, share our struggles (and successes), and be honest with the world about our lives with diabetes.

Excellent job on the panel. I found it very informative. Thanks for all that you do.

Both my son and husband have type 1. Your point about expanding beyond the bubble is right on...we do it one person at a time every day every chance we get. Also agree that caregivers do need support. Your closing statement was tremendous. Keep up the great work being an advocate and voice for the diabetic community!

GREAT talking points here and I am so glad you were there to represent!

I agree--the three points you address do need to be addressed further. I've been thinking so much lately about each point you raised and how to break the bubble--it's great we have each other and it's necessary, even, but how do we branch out and reach a wider audience and get them to care and listen up? This is perhaps where I think Type 2 can help us help each other.

There isn't enough support for Type 3's and I hope that is addressed, as well. It's been on my mind a lot (like the post I did to help folks who love and/or interact with people with diabetes: http://www.amyliagrace.com/2010/11/top-5-faux-pas-to-avoid-when-relating.html but feels like such a small drop in the bucket). We need to get organized and create a lasting system that helps!)

I hope we keep coming back to these points and together address them in lasting successful ways.

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