Reponse to 9/22 DSMA

On September 29, 2010 by Cherise Shockley

I would like to thank everyone who participated in the JDRF and ADA chat we had last week.  We all spoke candidly about the lack of support our local JDRF and ADA chapters had for adults, their fundraising efforts to find a cure and the need for more face time with other people living with diabetes Type 1 and Type 2. DSMA received a response from Mike Kondratick the Director of Grassroots Advocacy for the JDRF and I would like to share it with you.

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All,

My name is Mike Kondratick and I’m the Director of Grassroots Advocacy for JDRF.  I followed last week’s DSMA chat on Twitter with great interest.  Let me start this brief response by saying thanks to all of you that participated and shared your opinions.  I appreciate it, and I know many of my colleagues at JDRF do as well.  We can’t hope to improve and make ourselves more relevant without discussion and feedback.

I thought I would take a minute to offer some responses to some of the concerns that were raised.  I can’t offer responses for the entire organization, as I don’t do any of our fundraising or development activities. But, I can provide some insight based on my role at JDRF.

My role in the Advocacy Program, in a nutshell, is focused on building community—both online and offline.  This leads me to the points that were made regarding JDRF’s lack of attention to the Type 1 Adult community as well as the need to supplement activities like the DSMA through face-to-face interaction.  Scott Strange covered part of my answer in his blog series earlier this month where he detailed a conversation that we had.  I’d like to rehash some of it.

Our approach to the Type 1 Adult audience is changing for the better.  JDRF recently launched a Type 1 Adult toolkit and we’ve got plans to launch another very soon.  We’ve also made a significant investment in the development and marketing of the artificial pancreas.

From an Advocacy perspective, we try to address these issues every day.  We develop community around local Teams of volunteers in each of our chapter areas.  These Teams are comprised of people who span the demographic spectrum, from parents of kids with Type 1 to Type 1 adults to people who are just looking to help.  And, we continually invest our time and money in technology and outreach programs that support our Teams’ efforts to reach out to their local Type 1 community.  The more conversation we generate, we know stronger relationships will result.  Our Advocacy Program has been a beneficiary of that.

One of the programs we run regularly is our Promise to Remember Me Campaign.  Promise is an organized effort to generate as many face-to-face, in-district meetings with Members of Congress as we can over nine months.  Having Members hear stories from constituents makes for a powerful impression.  Members respond to the stories of both the Type 1 Adults as well as to parents and kids.  In our last iteration of the Campaign, we completed 431 meetings.  431!  I can’t begin to describe to you all what an accomplishment that is and the critical role it plays in helping to pass legislation that benefits those with diabetes.  But, it took the entire Type 1 community to make it happen.

Another program that we’re really excited about is our Type 1 Talk Campaign, which is coming-up on World Diabetes Day, November 14.  Mike Hoskins and Scott Strange have already blogged about it over the past few days.  We’re going to use a Facebook application to encourage people to host or attend events that bring their local Type 1 community together.  We’re going to include a live streaming video component to the day that will allow us to say thanks and allow you to ask us questions.

We’d like to provide you all with an advance look at the Type 1 Talk application.  The link is: http://bit.ly/Type1TalkApp.  Please take a look and let us know what you think.  We need to update our video and finish-off a few programming bugs based on people’s time zones, but the app’s functionality is set.  We plan on keep this basic FB framework in place after November 14 to promote continued T1 meet-ups.  The need to for face-to-face contact with others in the diabetes community is a need that our existing advocates have also told us that we need to try to fill.

We certainly do have specific legislative goals and, yes, we need everyone’s help to achieve them—you all as thought leaders, in particular.  But, through efforts like our local team building, our outreach via social media, and our Type 1 Talk framework we aim to address another concern that I saw–that we aren’t around in-between asks.  We certainly aim to be.  From an Advocacy perspective, we simply want to provide the diabetes community with a platform that you can use to draw you closer together on a daily basis.

I know the programs I’ve noted above don’t cover everything.  I know that we’ll need help to continue to improve our offerings moving forward.  So please, don’t hesitate to let me know how we can do that.

Many of you stated that there are several organizations that you utilize to meet your diabetes-related needs.  From an organizer’s point of view, I think that this state of affairs is the reality moving forward (in many issues areas, not just diabetes) and, to me, that’s a great thing.  Again, our goal is to make your JDRF experience as rewarding as it can be and to make our organization more relevant to you each day.  I know others stated that they hoped that JDRF would learn through exposure to groups like the DSMA.  To that, I can unequivocally say that we do.  Our Advocacy Staff learns something new each week.  The fact that you all have used Twitter and other tools to organize yourselves makes my job significantly easier.  Our hope is work with you to organize more effectively in the future.

Thanks again for taking a minute to read through this.  Please do let me know what you think about our Type 1 Talk application—or any other topics.  Your feedback means a lot.  My contact information is below.

Mike Kondratick
Director, Grassroots Advocacy
JDRF
1400 K Street, NW
Suite 1212
Washington, DC  20005
P: 202-465-4119
E: mkondratick@jdrf.org
Twitter: @JDRFAdvocacy

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Mike-Thank you for listening, responding and taking action.

2 Responses to “Reponse to 9/22 DSMA”

  • Thank you for your response, Mike.

    More focus on everyday needs are needed. Any way the JDRF can delve into that arena? One too many cannot afford insulin or test strips. I am one of them. T1 for over 25 years. I do what I can with what I have. Time and money are not always available for me to give.

    If we don’t have our basic needs met…..well, yeah.

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