What an honor!  I was chosen to receive a scholarship (underwritten by Lilly Diabetes) to attend the Diabetes Hands Foundation MasterLab 2016, a few weeks ago.  I was flown to Orlando, staying at the Marriott World Center … for a packed day of speakers, to learn so many aspects of ADVOCACY.  It was intense and I was struck by the range of interests amongst the attendees (about 115 outspoken folks with diabetes.  Indeed, it was an amazing advocacy training camp.

I must admit, at first, that I felt intimidated.  I recognized some names of attendees but not much more.  So, at breakfast (which, as was lunch, was filled with healthy food choices), I just plopped myself down at a table and introduced myself.  The connections were instant and suddenly everyone was talking.

I did not know what to expect and had not come with a specific agenda for a advocacy topic.  My mind rattled around with lots of ideas:  Medicare CGM coverage, Medicare Omnipod coverage, more patient access and involvement in product development, shining light on the new hot topic of gut and the microbiome, how to improve doctor-HCP-patient relationship … I could go on.

DHF bookWe were given a Personal Advocacy Plan workbook which was really well written, ranging from leading questions to action plans to action dates to social media campaigns.  Quite comprehensive.

I froze like a deer in headlights.  Which topic should I choose?  What criteria would I use to even choose the topic?  Would I have to share my work at the end of the day?  There wasn’t opportunity to interact and grow ideas with all these amazing advocating diabetics (a change from previous years) … but I was here and it was now.

I took a deep breath and a step back.  All I had to do was listen and absorb all the gems being offered.  I didn’t have to know my topic … that would come in due time.  As it always does.

Speakers came from all disciplines and areas of interest. Just to give you an idea of the presentations:

Keynote: Scott Johnson (DHF board member and long-time DOC member), urging us to look within.  He so inspirationally said: “When you feel something click into place, or you notice a tug of curiosity, or a surge of frustration… pay attention! That is your fire talking to you, and it’s hungry. Your job? Just take it all in, then follow your fire and feed your fire.”  Got it, Scott … thank you!!!

Boniece Weaver, executive director of Hebni Nutrition Consultants talked about her efforts to develop successful nutrition programs that work for those in underserved and at-risk communities in central Florida as well as how to find funding and to rally local support.  Her personal drive and focus were impressive.

John Griffin (attorney) and George Huntley (risk management executive), both PWDs, energetically discussed workplace discrimination.

Ellyn Getz hobbled up on crutches to discuss participation in clinical trials CISCRP (The Center for Information and Study on Clinical Research Participation) … and then we heard from we heard from 2 folks from AADE (American Association of Diabetes Educators).  Jay Keese, a lobbyist from the Partnership to Fight Chronic Disease discussed advocacy and lobbying.

Diabetes Coalition of CAAnd finally and keeping the best for last, Dr. Mark Heyman, a southern California T1 psychologist, spoke about the importance of taking care of yourself while advocating for others.  Mark is interesting: He is heading up the Diabetes Coalition of California in developing mental health guidelines for diabetes care. (More on this another time!)

As I mentioned, MasterLab was one, VERY long day … and after a few days exploring Florida, including jumping into a river (to cool off) in which we saw 2 alligators, we are home and my mind is now buzzing.

I have my project (in addition to advocating for CGM and Omnipod insurance coverage) … soon to be unveiled … and I’m on task, working through my now beloved Personal Advocacy Plan workbook! Thank you Diabetes Hands Foundation!

(About DHF:  www.diabeteshandsfoundation.org, also known as DHF, is a non-profit group whose “mission is to provide social support information and a sense of belonging to people with diabetes and their loved ones. It runs 2 social networks with over 50,000 registered members in total and a global annual reach of well over 3 million unique people.  TuDiabetes.org, www.TuDiabetes.org {which you see me reference frequently} and EsTuDiabetes.org offer people touched by diabetes a place to turn for information, community and social support on their journey.”)

 

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