There has been a lot of activity recently in trying to create more awareness about adult type one diabetics, both those diagnosed as children and those diagnosed as adults. I’ve blogged here and here about the JDRF. The Kansas City Chapter has been especially frustrating for me. I sent the following e-mail carpet bomb to every email address for the local chapter asking why are the KC events so hard to find?
In your spring 2010 news letter there was an article Let’s Meet: Calling All Kansas City Adults With Type 1 but nowhere in the article does it say how to find out when or where? I’m a member of a loose affiliation of bloggers, DiabetesAdvocates.org, and have been actively searching for events where I could share my experiences with other diabetics, yet it seems every time I hear about an event it has either already happened or I hear about it from another source. For example, the poker run event on June 12th. I heard about that on June 10 and it was in a newsletter from a radio station nothing from JDRF. I get emails from jdrf.org so what am I missing here? It is very frustrating to someone who wants to be able to participate can’t seem to find out how.
Had a bit of an email conversation with one of their office staff and expressed my frustration with the KC branch and the JDRF in general. The end result? They added me to some mailing lists. So I guess that is a win. I still feel their adult T1 outreach is pretty hollow.
This point resonated very strongly with me recently when Scott Johnson tried to herd us all together to tell what we, Adult T1′s, would like to see in a T1 conference. Basically, it is the DOC that is spearheading this effort, along with the Children With Diabetes organization, which organizes and puts on the Friends for Life conference. In the past, the focus has been children/teens with diabetes, but those children do grow up. Their needs change and that is starting to get some well deserved attention. Kudos CWD!
Now we can get to what started me on this little tirade. The JDRF sent me an email looking for applicants for it’s 2011 Children’s Conference in Washington, DC. I believe that this is an extremely important event as it is designed to keep research dollars from the federal government flowing into Type 1 projects.
Applicants must be between the ages of 4 and 17.
And that is where I got annoyed, as it still seems that the Adult T1 community doesn’t exist. How about putting some adult diabetics in front of Congress, JDRF? So we can explain the toll that living with diabetes puts on us day-in day-out for our entire lives. So we can tell about decades of dealing with the physical, mental, and financial toll that diabetes places on us and our families. And illustrate why a cure is so important so no other child has to endure this.
When I was a child, the JDRF was some what interested in me. As an adult not so much. They recently put out An Adult T1 Toolkit, which contains a lot of good information, but even that is directed mainly at the newly diagnosed.
It is very frustrating, to me at least, to see the JDRF, an organization devoted to finding the cure, simply ignoring those of us who have been out here the longest