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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My son, Byron, just started his freshman year in high school.  He was diagnosed with type 1 diabetes at the age of six. With high school comes a flurry of information about the future: each grade impacts Byron’s future options; community service hours will help break a tie for a coveted spot in a college; start planning for college tours; selecting the best college and on and on.  It makes it difficult to live in the moment.  Let this kid – and his mom – simply adjust to being out of middle school, just entering his growth spurt, a bit insulin resistant, eats everything in sight, interested in girls, and growing up very quickly.

Byron, age 6, year of diagnosis

Now that high school has slapped me in the face and thrown me four years into the future, I am feeling a bit nervous.  Although college tuition is a bit daunting, that isn’t why I am tense.  Here are the things that keep me up at night. Will he have a doctor that is as helpful as the one he will have had since diagnosis?  Will he be able to find insurance? When he feels burnt out, who will listen to him and understand where he is coming from?  Who will understand that he isn’t being defiant when he won’t answer a question — rather, his sugar is low and he needs juice?  When he gets discouraged by the effort he puts into managing his diabetes because the results don’t look like any effort was made, who will be there to motivate him and cheer him on and to remind him that it is all worth it.  We will still be part of his team, but he will need more and where will he be able to turn for help?

For years we have found support through the Juvenile Diabetes Research Foundation (JDRF).  We have Walked each year only to meet new people who have become  part of our ever growing support network.  We have attended conferences presented by JDRF in collaboration with UCSF and left with useful information and greater hope for the future.  Byron has greatly benefited from the research funded by the JDRF as evidenced by the  continuous glucose monitor (CGM) that he happily wears. We figured out how to get his CGM paid through the JDRF website (www.curetype1.org).

Then there are the tireless volunteers, like me,  who recognize that their child will – in the blink of an eye – leave childhood with diabetes still in their life and then become an adult living with type 1 diabetes still in need of support, good information, and a place to go where people “get it”.  I am one of those volunteers and I am working hard to make sure the JDRF is not only a fit for our family at this moment in time, but in four years and beyond when Byron leaves home and starts exploring the world.

Volunteers and staff are working hard to create supper clubs, youth leadership programs, mentoring programs, social networks, tool kits, a website that provides reliable and current information.

Each year, there are five Walk to Cure Diabetes in the Greater Bay Area. Walks are a fun and easy way to start building your network and to understand the magic of the JDRF community.  Both staff and volunteers strive to make sure the Walks a place where children living with diabetes and their families can begin building their support team and that adults living with diabetes – whether diagnosed as a child or an adult – can do the same.  The Walk to Cure Diabetes works magic!

Here is what I see:  My son leaves home and begins to find his way in the world.  He finds a chapter of the JDRF wherever life takes him and he signs up for a walk.  With it Byron begins to develop his very own network that can carry him through the years of his life.  He won’t be alone. He will have options.  He will have support.  The JDRF will be there for him.

What about you?  What do you see?

–Priscilla Call Essert

Byron 8 years later and four years to go