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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 ( 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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  • Great to see these efforts materializing, finally! Better late than never. You’re right in that the biggest challenge will be locally, where finding these Adult Type 1s to actually participate and be involved will likely be toughest – particularly since so many still view the JDRF adult-focused efforts so poorly. But, it’s a work in progress and will take some time. All we can do is try our best to help and do what’s needed. Thanks for the post, Scott!

  • Its about time.

  • You’re right on that one George, it is about time. It sounds like they’ve actually had somethings in place for a while, but getting the word out has been an issue. Try searching the JDRF site for this info and it just doesn’t seem to be there.

    Mike’s right, there’s still a bunch of work to do…

  • This problem is common in conditions that are normally scene as a child hood disease. The same thing happens in sickle cell anemia. You can all kinds of services for children but for adults the story is different and so is the disease as you get older.

  • I’m looking forward to watching this evolve and grow, and I hope that between the folks at the JDRF and people in the community we can make it all work.

  • I’ve had some discussions with my local JDRF chapter about getting some stuff going for adult T1s. We have one more Walk-a-Thon meeting left (the post-walk wrap up meeting), and then I’m hoping we can start to work on getting a group together for adults. I will say I was disappointed to see that my local chapter is only doing a child / family event on WDD, but I’m excited to help ensure some support and events for adults in the (hopefully near) future.