After an Open Letter the JDRF Opens Up – Part II

** I originally had told Kerri that I was expecting to cover this with a three part post.  However, I was able to cover all the salient points in just two parts; so today is the conclusion. **

Yesterday at Six Until Me (thanks again, Kerri!) I described part of a conversation that I had with Mike Kondratick, Director of the JDRF Grassroots Advocacy program.  And again I want to thank Mike for the nearly 2 hours he spent on the phone with me.  We left off with the JDRF wanting to take a more collaborative role with the Adult T1 audience, to actually talk “to” them as opposed to talking “at” them and to help facilitate communications within the adult T1 community not only for advocacy but for support as well.

One of the first major steps that the JDRF’s advocacy program is taking in this regard is their Type 1 Talk event.   Also present on our call was Melissa Smicker, who is heading up this project and was gracious enough to be in on our call for over an hour. Originally scheduled for November 6^th, it is now scheduled for World Diabetes Day (WDD) on November 14^th.

This rescheduling is somewhat important in my opinion because this is the first recognition that WDD has really received from the national level of either the JDRF or ADA.   Some local chapters and groups had recognized it, you may have noticed some blue buildings that day.  But other than the online community, there was a thunderous silence about WDD in the US.

Melissa said that within the JDRF, there had been a lot of conversations about how to make it easier for local advocates to get connected at the local level.  For example, a Facebook page which could help supporters find or create local events.

On WDD, high-level individuals at the national level of the JDRF will be hosting a uStream discussion where we can talk about what issues are important to us, ask questions, and find out what the JDRF is working on.  The idea is to participate in this uStream event through get-togethers at the local level.  Leading up to that day, the JDRF will need to hear from us on what we are interested in and concerned about so those topics can be addressed.

The JDRF will ask for this feedback through their new Advocacy Blog (http://www.juvenation.org/advocacy), participation in some Diabetes Social Media Advocacy sessions on Twitter (#dsma), and finally through the launch of their Type 1 Talk Facebook application in early October.

At the local level, the JDRF will provide materials to the local event hosts and describe how people can connect with their peers locally (not necessarily just through the local chapter proper) but through tools from the Grassroots Advocacy Program that allow individuals to  connect directly with others that are interested in coming together for support.  This obviously benefits the adult T1 community directly, but could also benefit the JDRF as there could be an increased interest in advocacy from the individuals participating.

Again, by taking steps to build community, the advocacy being sought is to get as many people as possible in front of their federal legislators.  The JDRF at the national level is incredibly focused on that, and while it is very important, I feel that there is another area that needs to be addressed just as much and I feel could have a much more immediate impact.

I’m talking education, particularly of the media where so many myths are sensationalized and perpetrated.  As diabetics on the ground so to speak; we are the ones that have to deal with those myths on a daily basis, regardless of what type of diabetes we have.   We’re the guys hearing “Exercise and diet cured my cousin” or “Insulin is a cure, you’ll be fine” and our all time favorites “Your parents shouldn’t have let you have so much sugar” or “You should have eaten properly and exercised more”.  Hopefully, enough legislators have remembered the stories told them by diabetics to not be fooled by these myths.  Unfortunately for us, the other 310M or so people in the US are not so well informed.

As the JDRF moves forward in supporting the Artificial Pancreas Project (APP) and other adult support issues, I hope everyone remembers that the cure is the goal of the adult T1 audience as well and we don’t want to seem to be drawing resources away from that race to the cure.  But these children with diabetes do grow up and as they go through different phases in life; their needs change.  For me, anyway, the longer I go with T1, it is much more difficult to manage the stress, mental and emotional challenges compared to the physical ones.   Mike believes that there is enough room “under the tent”, so to speak, for everyone to get what they need.  He sees no reason that the JDRF can’t manage both effectively.

He asked if I was at the Roche Social Media summit, I said no, but being a relative newcomer to blogging and considering the caliber of people who were, that wasn’t surprising. But I was surprised that the ADA was there as opposed to the JDRF.  He was wondering the about same thing.   The ADA brought some big names, including their Chief Scientist and the feedback I’ve seen is that the ADA seemed up-front and honest.  But most seem to be thinking “We’ll believe it when we see it”.

Mike agrees that the ADA and the JDRF, for that matter, need to put some points on the board with the Adult T1 audience.  He aims to do as much as he can through the JDRF Grassroots Advocacy program, demonstrating that the JDRF is dedicated to a collaborative approach moving forward.

I believe that the JDRF is starting to see the advantages of actually communicating with the Adult T1’s, especially as they move forward to the Type 1 Talk event on WDD.  In particular, the JDRF wants as many people being engaged at the local level as possible.  Their marketing has traditionally been kid-focused, so it is not surprising that someone in the Adult T1 demographic has never heard of the Promise Campaign or that a newly diagnosed adult T1 would even consider the JDRF as a resource since they are not juveniles.  Bridging that communications gap is critical for the JDRF to move forward in increasing the number of advocates out here willing to speak.  They have a large number of advocates, but not enough, and connecting these people locally thru the Advocacy Program is something the JDRF can do to not only meet their needs, but to address some of the Adult T1 needs as well.

One thing that struck me, was that Mike said they wanted more adult T1’s becoming engaged with the local grassroots leaders and not to just talk about fund-raising or the APP. Having local leaders that are willing to meet other people in the T1 adult demographic and draw them to the cause is vitally important.

Though JDRF needs people to communicate with their congressmen on key issues, there isn’t an urgent issue to talk about all the time.  So, the advocacy program has invested in communications tools that, beyond simply making communications with congress efficient, can also support year-round local grassroots activities, be it meet-ups, actual support meetings, or presentations on topics of interest.  Doing this keeps advocates engaged, making them more likely to take on an advocacy task when asked, but with the real benefit of building a community in the process.  For Mike, having access to those people willing to do this at their local level would be “nirvana”.

Can it be nirvana for us as well?  Perhaps, but time will tell.  It is going to take a distinct effort from both sides to actually converge at sometime in the future.  Do I think it’s possible?  Yes I do.  Will both sides stumble as we move toward each other?  Yes, we will.  But if there’s one thing I know about the Adult T1 crowd it’s that they always get back up and if they can’t get up on their own, they know that there is someone willing to give them a hand up and that makes us a very powerful force.

One that is just starting to realize its potential.