Tag Archives: friends for life

Friends for Life 2019

July 24, 2019 – 10:11 am

For many of us living with diabetes, being together and supporting one another through the day-to-day grind of a chronic condition is what makes us feel like we have meaning.

The notion of that statement was on full display last week at Children With Diabetes’ 20th annual Friends for Life event in Orlando. Young and old, newbie and veteran, all took turns sharing (both lterally and figuratively) and supporting one another.

I was at Friends for Life as a member of CWD’s IT team, helping to set up projectors and sound in rooms, and getting speaker presentations ready to go. Full disclosure: Children With Diabetes paid for my accommodations so I could work on the IT team at FFL. All opinions are my own.

When I think about it, I’ve probably been to four or five out of the last six or seven of these gatherings. But… I’ve never been there as a participant. I’m always working. First it was MasterLab a couple of times, in and out in a day or two. Then I manned the DPAC booth in the exhibit hall for a couple of years. Now, IT and AV tasks.

I say this so you’ll know that my observations are from someone who didn’t attend everything, or really anything, but watched as people who did experienced their best week of the year.

This past week, I saw kids happily run from place to place with smiles on their faces, knowing that no one was going to try to stop them from what they were doing because of their diabetes.

I watched teenagers as they learned to grow into bigger, better versions of themselves, knowing that they will have support from lots of friends and family along the way.

I saw a meeting room packed with people learning about DIY looping, and then participating in a looping workshop that was so popular its time was extended, and the next session, scheduled to take place in the same room, was moved to accommodate the effort.

I saw passionate advocacy sessions led and attended by people who want so much to make a positive impact for everyone living with diabetes, and to teach and learn how to do so.

I witnessed hugs and handshakes. Side conversations and inside jokes. The deep sighs from first-timers who are just starting to rein it all in, and the knowing support from veterans who have been there, and then some.

Behind the scenes was a dedicated staff of individuals, working registration, as room captains, in Sports Central, on the IT team, and handling a number of other roles with empathy and service toward all those attending.

Altogether, it made for an outstanding week of education, networking, and social events that isn’t seen anywhere else in our community. That’s why Friends for Life is so special.

For my part, I didn’t get to spend nearly enough time with anyone newly met or that I already knew. Weeks like this have a way of just flying by. To anyone who’s time was short with me, I’m sorry… I’ll try to do better next time.

For so many kids and adults who have diabetes in their lives, Friends for Life is their safe place. Their unique environment. Their hallowed ground.

Eleanor Roosevelt once said, “The future belongs to those who believe in the beauty of their dreams”. A couple of decades ago, there was a dream, and for the 20th time, it came true, for everyone at Friends for Life Orlando.

By StephenS | Posted in Events | Also tagged , | Comments (1)

Friends for Life Falls Church: A weekend well spent.

October 23, 2018 – 4:46 pm

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/

By StephenS | Posted in Events | Also tagged , | Comments (1)

Put these conferences on your calendar… now!

January 2, 2018 – 10:11 am

Happy New Year! Since we’ve reached the start of a new year, you might be wondering if there are events in your area that speak to diabetes, or to health care in general in 2018. If you live in my part of the world, the answer is Yes.

This is by no means a comprehensive diabetes conference schedule like the ones Christel Marchand Aprigliano used to write up. But if you live here in the USA, there are a few things you might want to mark your calendar for. Hopefully, these will get you thinking about how to further connect with the community this year:
 
 
Healthcare Costs Innovation Summit. This is an HCI-DC event, sponsored by West Health (HCI stands for Health Care Innovation). While this is not diabetes specific, I can relate that I went to one of these a couple of years ago and learned a lot.

This year’s one day event centers around what we, as a group, on this one day, can come up with in terms of innovations and policy fixes that might help slow down or reverse the rising cost of health care in America. Timely, yes?

Andy Slavitt, former acting commissioner for the Centers for Medicare and Medicaid Services, and a font of information on health care in America (seriously, follow him on Twitter) will be speaking, among others.

The best news is that the summit is free. The second best news is that it will be live and live streamed, so if you can’t get to Washington in February, you can still look in.

Healthcare Costs Innovation Summit
Wednesday, February 21, 2018 9:00 a.m. to 3:00 p.m.
Amphitheater at Ronald Reagan Building and International Trade Center
1300 Pennsylvania Avenue NW, Washington, D.C.
CLICK HERE to attend or sign up for the live stream.

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JDRF TypeOneNation Summit. The first of the JDRF TypeOneNation Summits will be taking place on January 20, 2018 (Middle Tennessee and North Florida). The summit in my state will be happening as usual on the first Saturday in March (March 3) in Bethesda, Maryland.

These are great gatherings that give those living with and caring for people with Type 1 diabetes the opportunity to learn the latest about technology and drug innovations, and interact with others from the tribe.

If you haven’t been to a diabetes event before, this is a great place to start.

CLICK HERE to find out more about JDRF TypeOneNation Summits nationwide.

JDRF Chesapeake & Potomac Chapter TypeOneNation Summit
Saturday, March 3, 2018 9:00 a.m. to 4:00 p.m.
Bethesda North Marriott Hotel & Conference Center
5701 Marinelli Road, Bethesda, Maryland
CLICK HERE for more information. Registration opens, probably, some time this week.

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Friends for Life events. Friends for Life will be coming back to Falls Church, Virginia in October of 2018. I’ll be looking forward to seeing old and new friends and learning more about a variety of topics with regard to cost, burnout, managing diet and exercise, and seeking support.

There are usually tracks for kids, teens, and adults at this gathering. If you can’t make the big FFL meetup in Florida in July, October in Northern Virginia is a very nice second option. If you live in the west, Anaheim in May is a very nice second option. If you live in the UK, Perthshire, Scotland in October is a super option. If you live near Toronto or in Niagra Falls, or anywhere else in Canada, Niagra Falls in November works pretty well too.

Friends for Life Falls Church
October 19 – 21, 2018
The Fairview Park Marriott
Falls Church, Virginia
CLICK HERE for more information on FFL Falls Church and the other 2018 Friends for Life events in Orlando, Anaheim, Scotland, and Niagra Falls, Ontario.
 
 
2018 is right around the corner. Get out your calendars and start planning! And if you have any conferences or meetups happening where you are in 2018, please let everyone know in the comments section below.

Note: the original version of this post listed the Anaheim Friends for Life event in April; the conference is actually May 4-6, 2018. Totally my fault.

By StephenS | Posted in Events | Also tagged , , , | Comments (1)

2018, you have big shoes to fill.

December 26, 2017 – 10:11 am

Well, it’s been a heck of a year, hasn’t it?

2017 has been the most full, and probably most fulfilling, of my years here at Happy Medium. This year has been quite a bit different from previous years too. Different in a good way.

January started with the beginning of my life on Dexcom, inserting the G5 and employing it as a useful tool in my diabetes management. Even if I complained about sensor and transmitter issues, and having to wear one more thing.

February included participation in the second Diabetes Podcast Week. I really love podcasting, and I wish I had more time to fit it into my schedule. I also shared a few notable quotes, and why they inspire me.

In March, I reported for the fifth time on what is now the JDRF TypeOneNation Summit in Bethesda. They’re getting better at bringing adults into the conversation. I also took the time to remind everyone that Nobody Ever Died from Obamacare.

April 1st marked the March for Health, in many cities across America. I was fortunate enough to be able to speak at the march in Washington, D.C., in the shadow of our nation’s capital. I also shared a story from my personal life that showed me how important it is to support your friends. It wasn’t about what I did… it was about what I learned.

Diabetes Blog Week returned in May this year, and it was wonderful, as always. Also in May, I took time to attend a public workshop at the U.S. Food and Drug Administration. I learned a lot about FDA’s Center for Drug Evaluation and Research, and the drug approval and after-market inspection process.

June brought about the rollouts of the new Accu-Chek Guide glucose meter, and (finally) the Dexcom G5 Mobile App for Android. I couldn’t be happier. I finished up the month with a meeting among diabetes friends, and it reminded me that we need each other now more than ever.

In July, I completed my local 5k run again, and did fairly well for a 55 year old who is a slow runner. I also attended another in the continuing #BeyondA1c discussions, and it was amazing, even if the information shared, at times, felt like I was trying to drink from a fire hose.

August posts included a note on conversations and my reaction to them. “It is always about enlightenment and being more comfortable being myself, and being myself with my diabetes.”

September was a hard month. I went through an unexpected emergency appendectomy, which included a very unexpected complication. Fortunately, I’m all better now.

In October, I shared my new role as a member of Maryland’s Advisory Council on Health and Wellness, and how this new role means I’ll be serving more than just the diabetes patients in my state. I’ll be serving all of the citizens of my state.

In November, I tried to remind everyone that while advocacy is often practiced with a little “a”, the effects of that advocacy can be very big indeed. I also went to a meeting at the U.S. Department of Health and Human Services, where I discovered that I was Enlightened, but Unknowing.

And in December, I’ve talked about doing a trial of the new-to-the-USA Freestyle Libre CGM. And I presented a list of 8 gifts that People With Diabetes could really use right now.

I would be remiss if I neglected to mention the two wonderful Diabetes UnConferences that took place in February and October. Or the fact that we’ve sent out another 15 or 20 Champion Athlete With Diabetes medals. These are feel good stories every single time. I also love hosting the Diabetes By The Numbers podcast, and hope to bring you more episodes in 2018. And thanks to Cherise Shockley and the followers on Twitter for the privilege and fun times shared while hosting some of the #DSMA chats throughout the year.

Thanks also to Christel Marchand Aprigliano for the honor and privilege of representing DPAC at Friends for Life events in July and October. We learn from heroes. We are supported by friends.

This is where I express my gratitude to you for visiting this space on a regular basis… I could do this without you, but it wouldn’t be as meaningful or as fun. Also, I hope that you have had a full and fulfilling year too. Finally, I want to strongly express my desire for all of us to work toward less division, less cost, more access, more support, and mostly, less burden of living with diabetes.

Goodbye 2017… you were a whirlwind, but a remarkable year.

Hello 2018… you have some pretty big shoes to fill.

By StephenS | Posted in Milestones | Also tagged , , , , , , , | Comments (1)

Friends for Life Falls Church.

October 12, 2017 – 10:11 am

Like the Energizer bunny, Friends for Life just keeps going.

I think Children With Diabetes, the organization that stages the Friends for Life conferences throughout the USA, and in the UK too (and occasionally Canada), would rather be thought of on their own, as opposed to being associated with a battery company. But that aside, after attending many of these now, I am still amazed at how they make each gathering spectacular and unique.

In Falls Church, Virginia last week, I was working the DPAC table in the exhibit space again, like I’ve been doing for a while now. That means I don’t get to get into many sessions, but I do get to see a lot that goes on around the venue. Not backstage pass kind of stuff, but things that I think help me see how much of an undertaking each conference really is.

The first thing I noticed was the update to the sessions in the schedule. More advocacy sessions with Christel Marchand Aprigliano and Stewart Perry. Cynthia Rice from JDRF and Paul Madden from ADA also jumped in here and there.

Also, there were sessions about Succeeding as and Adult and Parenting with Type 1, a Safe Zone discussion for Significant Others of adults with T1D, and two sessions for Grandparents and Occasional Caregivers. I saw a session on Your Legal Rights as a Person With Diabetes. When you’re tackling these subjects, led by smart people like Kerri Sparling, Tamara and Sean Oser, Brian Grant, and Leigh Davis Fickling, you know you’re going to learn something significant without needing a PhD to understand the subject matter.

Unlike some of the other FFL events I’ve been to, this time I was able to see a lot of the staff working in the background to keep things running smoothly. Think about everything that needs to be done: Making sure everything arrives (think T-shirts, badges, and those wonderful green bracelets). Setup and registration. Getting rooms ready with the right amount of tables and chairs, screens to view presentations, and branding material. Coordinating meals and food choices with hotel staff.

That doesn’t even count little extra touches that mean a lot. When someone at registration asked me if I had diabetes (do I get a green bracelet? YES!), then someone else asked, “Do you still have an appendix?”, it was the funniest moment of the entire weekend. I don’t know how they all remember so much.

I’m not kidding… everyone works so hard, yet makes it look so effortless. Many of the first timers I met, from Ohio and North Carolina and Pennsylvania and beyond, really appreciated how they were made to feel at home, and how accessible everyone was. How can I describe it? Friends for Life is a comfortable place where everyone feels like they belong. It’s a conference, while redefining the very meaning of that word. Friends for Life is an experience, not one time, but always.

Here’s your notice: if you live in the eastern half of the USA, you should know that Friends for Life is coming back to Falls Church, Virginia next October. If you can’t make it to the big event at Disney in July, this is a great opportunity to learn a lot, interact with others living the same life you do, and enjoy being part of the biggest group that no one wants to belong to… that just happens to be populated with the most wonderful people. To find out more, go to childrenwithdiabetes.com

Extra: You should definitely read this post by Leigh Fickling over at Six Until Me. This describes FFL maybe better than anything you’ve read above.

**Note: I get nothing for writing about Friends for Life. DPAC paid for my travel and accommodations to Falls Church, Virginia. Opinions on Friends for Life are entirely my own.

By StephenS | Posted in Events | Also tagged , , | Comments (0)
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