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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 6th, it is now scheduled for World Diabetes Day (WDD) on November 14th.

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.

  • http://wortheverypenny.blogspot.com Bob P

    Scott, your work on this is awesome.

  • tmana

    Some of the misunderstandings out in the wild are simply amazing. A young co-worker asked me yesterday if “People with Type 1 diabetes can ever graduate to Type 2?” The general public does not understand that these are two different conditions with two different causes, sharing only a name and certain symptoms / ongoing health risks.

  • http://textingmypancreas.blogspot.com Kim

    This post comes at a great time. Thanks for sharing all of this Scott, and thanks for bringing me out of the funk I’ve been in lately. It seems there is more hope than I thought. Now, to turn that into action…

  • http://thecornerboothcc.blogspot.com/ Mike

    Thanks for this, Scott. You’re exactly on point with the timing and train of thought. I’ve got the exact same concerns and feelings as you do, as far as what’s needed for and within the Adult Type 1 community. One of my big takeaways from the Roche Summit was how we so need to get the ADA and JDRF in a room together with the Adult Type 1 community, talking about the commonalities and differences and how we can all work together on various things suh as D-Meetups, fundraising, advocacy, and WDD events. I don’t see that as a blame-fest or finger-pointing, but a real discussion between the three that isn’t confined to some head-honcho’s boardroom behind closed doors. I am very intrigued by this Type 1 Talk initiative, though I must admit even the talking “to” component makes me uneasy. I’d prefer to see a talking “with” mentality, but maybe this is just semantics and I’m missing the point. I know in Indiana the local JDRF advocacy folk are excited about this, and we’re already using the Facebook and local D-Meetup “hanging out” methods to try and connect with more Adult Type 1s and not just focus on the fundraising element. Hopefully, this opens more doors. Thanks for what you’re doing to explore and get the word out on all this, Scott. I’ll look forward to seeing how the Type 1 Talks discussions go, and working with you and others as this rolls out.

  • Melissa Smicker

    @Mike, this is Melissa from the JDRF Government Relations office. I’m happy to hear that you are interested in the Type 1 Talk events. We definitely do not plan on simply talking “to” you. Leading up to 11/14, we’ll be asking for participants’ feedback on what topics they’d like discussed during the live streaming video and we’ll leave time for Q & A. We’ll also be asking hosts to schedule some time before and after the online presentation to encourage some local conversations as well. Feel free to send me an email at advocacy@jdrf.org if you’ve got any other questions. I’m happy to discuss with you.

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  • Linda

    Thank-you so much for bringing these issues out into the light. I hope the JDRF can direct a program nationwide for adults with Type 1 who seem to have been forgotten. The advances in treatment over the years have been wonderful, but the needs of those who have lived with this disease for so many years, are distinct from the younger generation. Waiting eagerly for new ideas and some new connections.

  • http://strangelydiabetic.com Scott

    @Mike – heheh, “talking to” = “talking with” in my brain

    Thanks for all the comments everyone, I’m excited to see what can happen

  • http://www.stiehlworks.com Chris

    I have had T1 since 1960, so I guess I am an “adult.” JDRF has not only ignored adult T1’s, they have, at times, deliberately disengaged them! A couple of years ago, we had a “research spokesperson” from JDRF-New York come to address our annual meeting. He talked for three quarters of an hour about all the research efforts being funded by JDRF. When he was done, I asked him about research on complications. He said that, since the economy was bad, they had decided not to invest in research on complications going forward. I came out of my chair! I asked him if he had read the Mission Statement for JDRF. He seemed dumbfounded. He hadn’t! There are TWO parts to it: a cure, yes, but also CURE THE COMPLICATIONS! This kind of a response from JDRF leadership is inexcusable! I am happy to have leaders like Mike Kondratick. I wish there were more within JDRF. He has the best feature a leader can have: he listens. Keep talking, adult T1s. There are actually more of us than there are kids, but the kids are best for photo ops with Congressman and getting donations from people, and from Congress. Let’s hope we can make governments understand how much money the complications cost the country each year.

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  • http://www.diabetesdaily.com/johnson/ Scott K. Johnson

    Thank you Scott for all the work you’ve done around this.

    It is encouraging to see interest in getting better connected with the adult type 1 folks.

  • http://strangelydiabetic.com Scott

    Thanks for the feedback, everyone. I’m anxious to see what happens when we leverage some of the national programs at the local level

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