Friends for Life Falls Church: A weekend well spent.

The last conference of the year (for me, anyway) is complete. Last weekend marked another terrific Friends for Life event in Falls Church, Virginia.

I went into this one not having a pre-defined role (i.e., not volunteering), which was nice because I could attend sessions and catch up on things I didn’t really know much about, or didn’t know enough about.

That included learning more about DIY artificial pancreas options from OpenAPS guru Dana Lewis. More on that later.

There was an opening keynote, presented by Stewart Perry and George Huntley, who just like during the DPAC Champions Policy Training Meeting a few weeks ago, talked about the various forces behind why insulin is so crazy expensive here in the USA. Everyone was on the edge of their seat.

The bulk of the sessions took place on Saturday, including three super DPAC-led sessions: one on current Advocacy Hot Topics, one on Storytelling with Facts, and one on State Advocacy.

The hot topics sessions (tag-teamed by Christel Marchand Aprigliano and Leyla Mansour-Cole) included a recap of some actual wins from this year (CGM data on smartphones for Medicare recipients), and advocacy items to keep our eyes on in the coming year. It looks like 2019 will include focus on a comprehensive vision bill for PWDs, and the re-ask on H.R. 5768 and S.B. 3366, which I wrote about earlier.

After hot topics, Christel and Leyla delivered an interactive session called Storytelling with Facts, which is focused on how to bring your own story into the conversation when advocating for an issue before elected officials and policy makers. At the end, we used what we learned to craft a pitch and deliver it to others in attendance. It’s a great session for learning exactly what to say and how to say it, and some of the pitches were absolutely stellar.

I missed most of the DPAC Champions State Edition with Leyla, though I was able to pop in at the end and add my two cents for dipping your toe in the advocacy waters at the state level. In some states, it’s super important.

The first part of that time I was in a different session, led by Leigh Davis Fickling, who I had read a lot about, but never seen in person. It was titled Your Legal Rights as a Person With Type 1, and in it, she provided a wealth of information on what rights a person like me has and doesn’t have, at the primary school level, at college, in the workforce, and more.

Some of what was in the session I knew, but had honestly forgotten. For that reason, it was a good refresher. But I also learned a lot that was new to me too. Leigh Davis Fickling knows what she’s talking about, and I was glad I stopped in for this one.

And that brings me to Sunday, where there were two sessions featuring Dana Lewis. The first was What You Should Know About DIY Closed Looping, and the second was a free flowing discussion on looping including Dana and other attendees who are actually looping themselves. In both of these, people in the room who are not looping (like me) were able to have all their questions answered by experts in the field (hint: the experts are the ones actually doing it).

Dana Lewis is another person who I had not met or seen speak before, though many had written about her and told me how great her presentation is. I was not disappointed. For more on her important work, go to
OpenAps.org

The conference ended with a keynote from Ed Damiano, giving an update on the iLet, or Bionic Pancreas, that he and his team are working on in Boston.

As usual, the weekend included adults and families, newbies and returnees, lots of hellos and goodbyes, laughter and tears. I’m grateful to the Children With Diabetes staff and volunteers for putting together a weekend like this and bringing it so close to home. I don’t usually talk about this, but the big Friends for Life event in Orlando is a tough sell budget-wise, so I’m really glad I can still get the FFL experience in a more affordable package.

In the end, Friends for Life Falls Church helped me continue learning from advocates and experts, and continue to be inspired by adults and children who bravely live their lives in the face of a chronic condition that never leaves them. A weekend well spent.
 
 
There will be more Friends for Life events: this weekend in Scotland, and the next weekend in Ontario Falls, Canada. In 2019, in addition to the annual conference in Orlando in July, Friends for Life will go to Seattle at the end of March. They will be back to Falls Church in early October next year, back to the UK at the end of October, and back to Niagra Falls in early November. To find out more, go to
ChildrenWithDiabetes.com/activities/

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