March 8, 2016

Finding My Voice

I’ve had diabetes for a long time, and have never had an issue standing up for myself or others.

I have always wanted to do more.  But how? What?  What could *I* do to bring change? To make a difference?

Every year I raise as much money as I can for the Juvenile Diabetes Research Foundation.  But every year I also say I want to do more.  But how?  What?  What could *I* do to bring change?  What more could I do to make a difference?

For quite some time I’ve been advocating for more programming for adults with T1D as there doesn’t seem much available.  Understandably there is a lot of support for newly diagnosed children and their families, but what happens when those kids grow up?  They still have diabetes.

In the spring of 2015 things changed.

I applied to to be a MiniMed Ambassador through Medtronic Diabetes, and was accepted into the program!  I wasn’t exactly sure what it would involve other than talking to people about life on an insulin pump, which I was already doing.   Around the same time (April/May) Camp Nejeda held it’s first program for adults with T1D that I had a strong influence in building, working closely with the development staff.  Then, in June Medtronic Diabetes held a contest to send a lucky winner to #masterlab (see Medtronic Diabetes Loop blog post)  and I was selected to attend as their guest.

(feeling as  though things are starting to fall into place)


I sat in the room with many influencers in the diabetes community, many that I didn’t interact with previously , or to be honest hadn’t interacted with at all. hearing their stories and what they’ve accomplished fueled my desire to do more.  But how?  Some of the folks in the room wrote fabulous blogs.  Some were making great strides in advocacy,  It was suggested that I should  keep telling my story and eventually the right person will hear it.


At #masterlab, I had the opportunity to speak to Kelly Kunik about blogging, since I never really tried it.  Her advice  to me was to just write, to not write to gain an audience.  That’s when I created this blog, though I’ve realized this isn’t my strong point.  But I will keep at it – they say writing can be therapeutic.  If someone happens to come along and gain something from it, an extra win.


Before #masterlab, I didn’t use Twitter.  To be honest, I didn’t understand it.  I created my account to contact some companies about customer support issues. I had no idea how to obtain followers, and was in awe again that people in the room had hundreds, some thousands.  I learned how to live tweet, and also learned about Twitter chats.  It took me a while to figure those out but I’ve come to look forward to #dcde and #dsma  I’ve even made some local connections through it – who knew?

I want more!

The question remained though, of  how to connect to other T1Ds locally, and routinely?  Luckily, the MiniMed Ambassador folks were already thinking about that!  Through them I was connected to the New England American Diabetes Association (ADA).  Late October I had the good fortune connect with the New England ADA Mission Manager, Alison,  by way of  a volunteer conference.   Alison and her colleagues presented the ADA mission, and at the end asked if anyone had questions.  Since adults with T1D weren’t mentioned, so  I asked what they are doing for this demographic.    My question was met with silence, and I thought perhaps I asked something bad, or opened a can of worms that should have remained shut. The silence was everyone thinking about it. It turns out, they weren’t doing a lot, and many people chimed in with ideas, and suggestions.  I’m happy to say that since that meeting I’ve been working with Alison on this and hope to launch some events in the coming months.

but wait, there’s more!

For the last few months I have also been working with Camp Nejeda to help develop this year’s Survive and Thrive Bootcamp 2016.  We have a great panel of presenters lined up, and spots are starting to fill up!

Last but very not least, I found out a few weeks ago that I was named in the top 15 Ambassadors for 2015.  It takes a lot to make me speechless, but that did it!  The program connected me to the online (#doc) and local diabetes community in ways I never imagined, and I ran with it.

I think I found my voice.

Blog:  http://diabetestrueconfessions.blogspot.com/

Camp Nejeda Survive and Thrive Weekend for Adults with Type 1 Diabetes (May 20th-22nd):  Survive and Thrive Bootcamp 2016 for adults with type 1 diabetes