Wednesday, January 28, 2015

The Overlooked Demographic

During last weeks DSMA chat the topic of JDRF and their area of focus came up between a few participants.  One person in particular was very bothered by the focus of JDRF on kids and families of kids with Type 1 diabetes.  He, like me, was diagnosed after he was into adulthood and was left feeling very alone and isolated with no real support network.  I can relate 100% with how he felt, because I felt the same way.  My 'local' JDRF chapter covers Utah and Idaho and is based out of Salt Lake City, 350 miles away.  They still facilitate several events in the area and there are some people locally that keep things going with them but they are all parents of Type 1 kids, so that is where the focus is.  The 'local' ADA chapter is in Portland, Oregon, 430 miles away, and covers Oregon, Idaho, and part of Washington.  Since my diagnosis almost 4 years ago the only ADA activity I have seen in the area was the Community Walk fundraiser, which I brought to the area and organized for 2 years before moving on from it.  So I don't know what these organizations are like in other parts of the country, or what is available for adults with Type 1, but in my neck of the woods the effort is focused towards the kids and support for adults is non-existent.  I'll never forget the first diabetes related event I attended here.  It was a Christmas party put on by JDRF and Hodia, the local kids and teens camp.  I walked in not knowing anyone and got asked too many times which of my kids had diabetes.  The answer to which is neither.  I felt like I was intruding and taking part in an event that was meant for kids,  So I can relate to those feelings of isolation.  Even now, outside of the online community, I do not have much interaction with any of people with diabetes.  The few connections I have made, came from my own searching out people and volunteering with other T1D organizations.  And of all the people I've met, even the 30+ at DTreat last year, I can count on one hand how many of them were diagnosed as adults.

I'm not bitter or angry with JDRF for where they focus their efforts.  Because Type 1 was originally thought to only present in kids and it was during that time that JDRF was founded it makes sense that this would be where their primary focus is directed.  Besides, lets face it, you get a lot more support (and dollars) when cute kids are involved.  Nobody notices about the twenty-something guy that is struggling through college trying to balance school, work, and being a pancreas.  But put little Sally out there and show how her diagnosis has effected her whole family, talk about how a 3 year old has to endure multiple shots a day, or the burden the cost of supplies puts on her family.  That sells.  Cute sells.  And if that's what brings in donations that will ultimately benefit every person living with T1 then so be it.  And from what I hear JDRF has done a better job and supporting adults more recently.  And it may well be different depending on your local chapter.

I guess the point I am getting at rambling towards is that adults with Type 1 diabetes, especially those diagnosed as adults, are a sorely overlooked demographic.  I've written posts before talking about what I want to do to change that.  I would love to head up a group that can facilitate meet-ups for T1 adults.  Even better I'd like to include a mentorship program for newly diagnosed adults and their families.  If you think a diagnosis effects a family any less when it's Dad that's diagnoses instead of Junior, you are way wrong.  It's a great goal.  One I feel passionate about.  There is just one problem.  I have no idea how to get there.  I have tried getting involved with some national organizations working towards that goal but have never really gotten anywhere with it.  The closest I got was creating a group through T1DN, who has groups geared in that direction.  It was going great, I got the paperwork filed, got a lot of the materials, and then couldn't get anything else from them.  I wanted to change the name to include the entire area I live in, not just one city and they said great...but it never happened.  Then I stopped getting answers to my emails.  There was no support there for someone trying to get started.  Another dead end.  The answer seems to be building it from the ground up.  Starting with some weekly or monthly meet ups with others Type 1's and let the word spread.  Build it up from there.  And I would love to do that.  But I am such an introvert (and seemingly getting more so by the day), that just gathering a group of strangers and trying to interact and share my vision is a mind boggling thought.  On top of that my work schedule and family schedule make that difficult.  It is so hard to have an idea in your head, to have the passion burning to do something with it, but just not knowing where to go with it, where to start even.  So if any of you have been involved with something similar, I'd love to hear your ideas.


  1. Full disclosure: I work for JDRF. However I'm not high enough up the food chain in the organization to do anything in your area. I can explain what I've seen overall though.

    In the type 1 population overall, 85% are adults. We SHOULD be the majority. We should outnumber the "cute kids" but for some reason we don't. I know some people who were diagnosed as kids (I was dx as an adult like you) are tired of fundraising for research because they've done it for decades. Maybe some people are busy with jobs and life. Maybe some people still think all the focus is on the kids so they don't even bother. I know some don't even know about JDRF at all.

    The reason why the kids show up is because their parents are still motivated. Their parents want a cure for their newly diagnosed child and so they are going to make a walk team and they are going to ask their colleagues to join them at the gala. We just need to figure out a way to motivate the adults with T1D the same way.

    All that being said, our entire outreach program in our chapter (mentors for newly dx people, monthly support group meetings, leadership program for children with T1D, and our adult group) is organized 100% by our volunteers. Maybe your chapter doesn't have anything because no one has volunteered to run it. You wouldn't have to start from the ground up if you worked with them. They've have a good list of names and probably even a budget to get you going.

    I hope you can find what you're looking for. Long before I started working for a diabetes organization, connecting with other people living with T1D made all the difference for me.

    1. Those are good points. I can definitely see how people are burned out on fundraising by the time they reach adulthood. I'm 4 years in and while I'm still passionate about helping organizations, I find myself doing so more with my time and helping with events rather than campaigning for money (outside of the JDRF walk because just participating and getting people from work to participate brings in money regardless of how much I get people to donate). And I still believe it's easier to get people to donate when kids are involved. Parents are able to crowdfund to get their child a pump or Dexcom. What would it look like if I did this as an adult?

      I hadn't thought about the JDRF helping to get things started as being an option. Any attempt to get things running through other organizations has not gotten me far as of yet. But I am helping to plan this years JDRF walk along with another event this year so perhaps that will help get things moving.

      Thanks for the input Sara I really appreciate it. I feel the same as you, connecting with others is a huge difference maker. I was a lot older than most of the DTreat attendees when I went last year but I still rode that high for weeks