JDRF and Adult Type 1 Outreach

Recently, I had the opportunity to speak with Andrea Hulke who is the Director,  National Outreach for the JDRF.    You may remember that a few weeks ago, I described a discussion I had with Mike Kondratick, who is the Director, National Grassroots Advocacy.

Now, while those titles may sound somewhat related, their functions are not a similar as you might imagine.  Mike manages a nationwide network of diabetes advocates through which he needs to drive activity in local communities.  To do this, he connects advocates at the local level, thus enabling some adult Type 1 “networking” and, over time, a stronger overall Type 1 community.

The local chapters are focused on fund-raising, and that is an important core-mission, but these kids do grow up.  And when they do, finding T1 support from the JDRF, or anyone for that matter, can be a hit or miss affair.  Mike’s approach would allow individuals to facilitate support groups without the involvement of the local Chapter, but with the hope that the Chapters would be active participants.  Active participants is a key point; we’re talking support groups here, not fund-raising.

Andrea has been with the JDRF for about 7 years, originally in the St. Louis office where she began the first formalized JDRF Chapter Outreach Program.  For the last 4 years she has worked on the National Outreach program.  Initially she was the only Outreach staff person in a chapter, but now there are more than 35 chapters with Outreach staff and 4 national Outreach staff members.

Her group’s mission is to support, engage and connect the type 1 community to each other and to JDRF.  One of the ways her group does this is through working with non-JDRF support organizations, such as ACT1 and also with local Chapters on their community outreach programs.

In addition, they develop resources across all life stages to help make “life” with type 1 diabetes a little easier – the first example of these resources for adults was the newly diagnosed adult type 1 toolkit (www.jdrf.org/toolkits) which launched back in February.  This January they will be launching a toolkit for the established adult with type 1 and later in the year a toolkit focused on pregnancy and parenting as an adult with type 1.

Andrea has helped formulate the national chapter Outreach program standards including Adult Type 1 Outreach, something that was missing before.

She and her staff also work with local Chapters to help them establish local formalized support programs across all life stages with type 1, with a more recent specific focus on Adult T1 Outreach programs, and this is now something that each chapter must support.  Supporting the Adult T1 community is no longer an optional program for local Chapters or the JDRF Nationally.

I’m going to say that again simply because it is an incredibly important thing to those who have been out here for the longest and the newly diagnosed:

Supporting the Adult T1 community will no longer be an optional program for local Chapters.

Now, I’m going to be honest here.  The JDRF still has a lot to prove in these areas.  Myself and a lot of other folks I have chatted with about this are taking a wait-and-see approach.

It is very hard to find information on these Adult T1 efforts going on within the JDRF unless you happen to be able to find the right person, and sometimes it seems that the JDRF isn’t too sure itself.

These efforts are just getting started and from the National Level, I believe that the players involved in these Adult T1 Outreach programs are very sincere and truly do want this to happen.  And for that, I am more than willing to give them the benefit of the doubt.

Honestly, the ball is being passed on to each Local Chapter now and that may be where the real challenges lie.  With 85 Chapters spread out across the country, I truly hope that it doesn’t turn into an exercise of cat herding.

Thanks for stopping by!

Today’s snarky comment: Hey Ref! You suck!

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Walking the Walk in Kansas City

This past Saturday, I participated in my first JDRF Walk for the Cure.   I have to say, it was a really amazing event.  I haven’t seen any official numbers, but they were expecting 10,000 people and to raise, I believe, $750,000.  Our adult T1 Team, “AT1 – We run on insulin” had raised $3,850 as of walk day (way to go  team!) and had some shirts made, designed by team member Andy Pitt.

Team AT1 - We Run on Insuling t-shirt back

Here’s the front

The "before" image of the t-shirt front

Now the idea was to take a marker and fill in the “blanks” of what you wanted to do to diabetes.  I got busy talking to some folks and didn’t get mine filled out before the walk started, so I filled it in afterward:

 

I want to "get all medieval on" diabetes

 

And yes, I realized I had misspelled “medieval” after the fact, of course… /facepalm

During the walk, a 2-mile stroll around the Legends area in Kansas City, KS (yes there is one in Missouri too), I spent quite a bit of time talking with my local Animas rep, Jason. We talked about pumping and how we were going to miss our favorite CDE, who recently accepted an opportunity in California.

Jason, who himself, is a T1 veteran of 24 years, was very open about how he encourages he customers to visit sites like TuDiabetes for information and support  and how that he also always encourages them to give feed back on their pumps.  He says that is really the only way Animas can make their pumping products work better for us and he is very much correct in that regard.

Now, most of you reading this aren’t too shy about speaking your minds, so as we move in to National Diabetes Month, take some time to do exactly that.  I plan to give a much more in-depth review of my Animas Ping than I did a few weeks ago.

Another point Jason raised, was that in speaking with patients and doctors, he felt that most patients were not intensive enough in their diabetes management.  Many often get started on pumping and may rarely, if ever, adjust any of their settings even if they are experiencing hypo- and hyperglycemic events.  That surprised me somewhat, thinking of the people I knew online. I then realized that most of the people online are the ones actively managing their condition.

How can we reach out to the others?  Is it an issue of denial?  Of isolation?  What can we do to help these people?  How can we find them in the first place?  Do they want to be found?  These may be the questions of the decade…

While this was the first walk I actually participated and raised funds for, I had visited one earlier this year and blogged about it in A Bitter-Sweet Experience. Also, in the past, I have been pretty harsh on the JDRF in some regards as an An Open Letter to the JDRF describes.

Since then, I’ve had, not only more in contact with the local chapter here in KC, but also the National Chapter and their advocacy efforts and now I have a better understanding of how things work.  In particular, I think I understand why there seems to just be a hodgepodge of local chapter’s outreach efforts to the adult Type 1 community.  I see that a local chapter’s focus is on fund-raising from the private sector and sometimes thing that don’t directly “work for the cure” get shoved to the back burner.

The National Level has taken criticism about the Artificial Pancreas Program (APP) because those resources are not being directed for a cure.  Well, guess what critics?  Those kids grow up.  Anything that can be done to help reduce the chance of long-term complications is well worth the resources.  While there are “immediate” issues such as dangerous hypoglycemic and hyperglycemic events, the real danger is much more insidious, the long-term complications that develop slowly.  Often unnoticed until they manifest themselves and then it is often too late.

So, critics, explain to me, why the HELL we wouldn’t want something to help these children grow into adults, have families, have grandchildren?  Why the HELL wouldn’t we want them to get the best care available and have the best life they possibly can?

I’ll stop ranting now and congratulate the Kansas City Chapter on their hugely successful walk and I look forward to continuing to take part with them in local events leading up to WDD and further Adult T1 outreach efforts!

Check out Fox4 News coverage of the event at  Walk Raises Money for Juvenile Diabetes!

Thanks, for stopping by!

Scott

Today’s snarky comment: Honestly people, the trick isn’t thinking outside the box.  The real trick, my friends, is realizing that you’re in the box in the first place.

It’s No D Day here at Strangely ********!!!

Today is No D Day, a tradition started by George, aka Ninja*****, to highlight that fact that ******** are more than just their ********.  Know what I mean?

So here are some miscellaneous facts..

I love pina coladas and getting caught the rain.  Actually I can’t stand piña coladas (mostly because I’m not sure how to spell it) and getting caught in the rain just annoys me.

Diet Coke and popcorn should be their own food groups.  I believe bacon already is one.  And meat?  Eating meat is murder.  Tasty, tasty murder.

Self help books to deal with helping myself always piss me off. I’d read one on anger issues but I’m afraid that would end… badly.  Everyone would end up in  tears, I just know it.

I would never go on a date with a woman crazy enough to go on a date with me.  Ah, who am I kidding, of course I would.  I always seem to attract the crazy ones anyway.

If my hair ever turns completely gray, I won’t color it.  I figure that I’ve earned it.

I once nearly got ran off the road by a woman in an SUV as she was entering the highway.  I swerved, honked and ended up right next to her in the left lane.  Her response was to look over, point at her cell phone and mouth the words “I’m on the phone”.  And yes, as she was pointing, neither hand was on the wheel.

Just because you don’t like my answer doesn’t make it wrong, but that is just my humble, yet always correct, opinion.

I could never really get the hang of Tuesdays.

Go Go Gadget Diet Coke Machine!

If you are running around like your head’s cut off, how do you know where you are going?

Why is bigger better? Because it is, duh

Twitter is like sending a text message to all your friends at once.  Which is good for me since I’m lazy.

Why does my computer always do exactly what I tell it to when that is often not what I really want it to do?

After they get you, are you still paranoid?

Coming to Kansas City and not eating BBQ?  It simply isn’t done.

Click Me

And I’m spent!

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Type 1 Talk Launches: Please Join the Conversation

A part of the JDRF Adult T1 Outreach Program, they have launched their Talk T1 Program. The needs of the adult type 1 (either diagnosed as a child or as an adult) audience have traditionally been ignored by the JDRF, so here is your chance to let them know what type of support you need as an adult.

From the announcement

The JDRF will be doing a live streaming video presentation that day to discuss type 1 issues that are important to you

This event will be occurring on WDD, November 14 and it is the first time that either of the national organizations have ever acknowledged that the day even exists.

Please read all the details at: Type 1 Talk Launches: Please Join the Conversation and give them your concerns as an adult T1.

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