I have been a member of the JDRF staff for only 16 months. But as the story goes, JDRF was started by a group of parents whose children had type 1 diabetes. The parents were determined to find cures for their children. And so it began that other families were the focus of the work of JDRF. As the organizations begins its 40th year and at the same time exceeding $100 million contributions annually in diabetes research funding, it is about time that the organization realizes that there is a much larger diabetes world than families with children with diabetes. After all, what happens when the children become young adults? What about the other 50% of those 30,000 people annually diagnosed with type 1 diabetes?
Outreach is now a respected part of JDRF. I believe that the good work of Andrea Hulke in National JDRF deserves a lot of credit. As we conclude our 39th year, Andrea has developed a plan for JDRF to meet the needs of people living with type 1 diabetes through the various stages of life. I think it is a wonderful plan. In JDRF Bay Area we have about 100 adults in our database. We have programs for adults, committees for adults and adult oriented events. Very soon we will have an awesome Adult Tool Kit. So here is our dilemma. Why would an adult recently diagnosed with type 1 diabetes contact an organization — for information or support — called the Juvenile Diabetes Research Foundation? Clearly this is an organization, based on its name, dedicated to the very youngest of all people living with diabetes. Or so it would seem from the JDRF name. The truth is, it is a revamped old name that has equity. JDRF means a lot. When we read JDRF each of us have an unique understanding of what that name represents.
Did you know, that in the ’70s and ’80s there were two types of diabetes mellitus – juvenile onset and adult onset. According to Aetna, type 2 diabetes is also called type 2 diabetes mellitus, adult-onset diabetes, non-insulin-dependent diabetes, or just diabetes. Today the same diseases are called type 1 diabetes and type 2 diabetes. What did they call the 50% of people diagnosed with type 1 diabetes as an adult in the ’80s? Juvenile onset a bit late? In 2010, who would know that several decades ago when a nonprofit was forming the disease had a different name? Actually who would care? Why would an adult in 2010 searching the web for information about diabetes and click on the Juvenile Diabetes Research Foundation if that name came up in the search? I would click right past it. So this is the dilemma.
I have oversight of JDRF Bay Area Outreach, on the other side of the country from National JDRF. I am not sure a name change is likely. I once worked for a nonprofit when it changed its name to better reflect the diseases it represented. I never really liked saying the new name. It sort of always stumbled out of my mouth when I had to say it. Much of the former organization was lost when its name was abandoned.
JDRF Bay Area would like to connect with adults because JDRF has important information to share and support and because we are adults too. Sometimes just connecting with others who also live your struggles, helps. So what suggests do you have for how best to connect with adults and their family’s either living with type 1 diabetes or recently diagnosed and haven’t been living long with type 1 diabetes?
Priscilla Call Essert leads Outreach as the VP, Outreach on the Chapter Executive Board. Carolyn Eisen is JDRF Bay Area’s Outreach Manager. Nancy Cook also works with us at JDRF and she has been living with type 1 diabetes for 52 years. And I am Greg Martin JDRF Bay Area Branch Director. We are eager to hear your suggestions and ideas. We thank you.
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