A First-Timer's View of the Friends For Life Diabetes Fest
This year marks the 17th anniversary of Friends For Life, the annual diabetes fest hosted at the Orlando Disney World Resort by the non-profit Children with Diabetes, with the 2016 event wrapping up last week. While the conference started off serving type 1 children, it has grown over the years to encompass everyone in our ecosystem — from siblings to grandparents of children with diabetes, to adults with type 1 — many of whom first came to the event as children themselves years ago.
This was my first time attending FFL. I’d heard good things about it, but to be honest, I’ve been struggling with some diabetes overload and I wasn’t sure how I’d feel once I got there. The night before I departed, my mother asked me, “Are you looking forward to your conference?”
To which I replied flatly: “I can’t work up the energy to be excited about anything that deals with diabetes.”
But as it turns out, I was wrong. It turns out that while we don't have a cure for diabetes yet, we do have a cure for all the bad crap that happens inside your head, heart, and soul because you have this yet-to-be cured disease. Yes, that cure is to be immersed in a thousand of your own kind -- people who get it, people who share your struggles, people who walk in your shoes and are yet thriving and full of life, love, and happiness.
Hello, Friends For Life!
Badge of Honor
My long journey from my home in New Mexico to Orlando, Florida (in July) didn’t prime me for an increase in energy, either. It took more than 12 exhausting hours and I was pretty wilted when I finally arrived. Then, wouldn’t you know it, there was some confusion at registration. Apparently I didn’t exist. But luckily for me, Brenda Hitchcock—spouse of CWD FFL co-founder and ring master Jeff Hitchcock—knew who I was. She printed a DiabetesMine badge for me, adorned with a purple “First-Timer” ribbon, which I didn’t know how to feel about. Next, she handed me a green tyvek wristband and said, “Here’s your badge of honor.”
Green is for people with diabetes. Orange is for family members. Yellow is for people with celiac. (Do they prefer to be called PWCs? I’m not sure…). Already grumpy about diabetes, I wasn’t feeling too honored to have the green band.
But 24 hours later, I was in love with it.
There were green bands everywhere. Oh look. She has it, too. And he does. And that little one over there. I’m not alone in the crowd. I’m part of the crowd. Men. Women. Boys. Girls. Green bands over every color of skin.
When the conference was over, I carefully cut off the band, neatly folded it, and packed it away as a treasured memento.
A Packed Program
Early estimates were that around 2,000 people from around the globe attended this year, a bit down from previous years, and that included a record number of “first timers,” like me. At final tally, conference organizers told me that they had about 700 first-time attendees.
There was a plethora of planned activities, social events, and workshops for PWDs of all ages—kiddos, tweens, teens, and adults—as well as for sibs, parents, and grandparents. Offerings included presentations on CGM data, communicating with children, sick day strategies, exercise and type 1, burnout, hypo prevention, carb counting, understanding A1Cs and more. There was also a Spanish language track. The JDRF gave an update, as did the Diabetes Research Institute, about the latest in cure and diabetes research news (and DRI had some cool "May the Cure Be With You shirts you could buy, too!).
There were screenings for retinal damage, celiac, and TrialNet genetic markers, along with the opportunity to sign up for several clinical trials. Day-long pump trials (with saline) were available with the Animas Vibe and Animas Ping systems, the Omnipod tubeless pump, and Tandem’s full lineup of touch-screen pumps,
Generally speaking, as I looked at the schedule, I agonized over what to attend. There were simply too many good choices in each time block. And unlike every other conference I’ve ever been to, I didn’t need to jab my pen under my kneecap to stay awake. Not once. Even jet-lagged, without exception, the quality of the speakers kept me alert and engaged.
iLET Bionic Pancreas Updates
D-Dad Dr. Ed Damiano gave his yearly update on the iLET "bionic pancreas," the dual hormonal closed-loop artificial pancreas (AP) system in development, now under the newly formed company Beta Bionics. As has become expected due to Ed's love for FFL, many iLET developments have become "must see news items" at this annual conference.
This year was no exception.
The big update: a prototype of the dual infusion set design was unveiled. This double-cannula set features either a 6 or 9 mm steel needle. When I asked one of the developers why steel, I was told that they're using the most promising stable glucagon formulation in development, which would dissolve a traditional plastic cannula. Now, a different formulation appears to be ahead in development, but it’s too late to change course on the infusion set. Oh well.
Still, I gotta say, after listening to Damiano and seeing his data, I’m a believer. For the first time, I think I’ll live to see this artificial pancreas technology hit the streets. I just think it will be farther down the road than he thinks it will be. But not as far off as the colonization of Mars, like I had previously anticipated.
For background, I need to remind you all that I’m the ultimate skeptic when it comes to AP systems, and I have good credentials for my skepticism. I was one of the first people in the country to use continuous glucose monitoring technology when it first came out, and I’m probably the longest-running continuous user of CGM, not to mention having written several books on the topic. They’ve come a long way, baby, but I still wouldn’t trust one to be the overlord of my insulin. Most of the time, my CGM works great. But every once in a while, it does the funky chicken dance and gives readings hundreds of points off.
Add to that the fact that we still don’t have the capability to run a dual hormone pump (distributing insulin and glucagon), and you can see why I’m not expecting to see an AP on the street anytime soon.
Bottom line, IMHO: Go ahead and upgrade your pump.
One last time.
Speaking of Devices...
I doubt the warehouses at Insulet have as many Omnipod insulin pods in stock as I saw on arms at the conference, along with traditional belt-mounted pumps and a dizzying number of CGM transmitters worn openly and proudly, many decorated with bright colors and bold graphics. The younger set is at one with their diabetes technology in ways that would have been hard to imagine a decade ago.
At the conference Exhibit Hall, everyone you’d expect to be present at a major type 1 diabetes conference was there, except for Medtronic. The long-time supporter of the conference apparently pulled out somewhat at the last minute, nearly causing a cancellation of the event.
Shame on you, Medtronic. I saw lots of your products clipped to shorts and T-shirts, but you weren't there with the rest of the companies for those using or possibly interested in your product.
Pump-wise, Animas, Omnipod, and Tandem all had large booths. Lilly had a monster booth that exclusively showcased their support programs, rather than their products. Dexcom was of course present, along with Novo, BD, Janssen, Sanofi, Ascensia, FreeStyle, and more.
One small booth that caught my eye belonged to Pump Peelz, founded by T1 Emily Imblum and her husband Scott Imblum, who make really great skins for pumps and CGM receivers, as well as decorative covers for CGM transmitters. Also shout-out-worthy is Glucolift, run by T1 Christopher Angell, which makes chalky-free glucose tabs and gels.
We also saw some great other Diabetes Community folk there on the exhibit hall floor, from our friend Kelly Kunik at the #IWishPeopleKnewThatDiabetes booth who welcomed people to share their tidbits on colorful sticky notes; and the Nighscout Foundation that decorated FFL badgets with battery-powered lights that would last for days. We also took notice that this was the first year the Diabetes Patient Advocacy Coalition (DPAC) had a booth to promote its advocacy and lobbying work on important diabetes issues.
Celebs on the Scene
One of the most noticeable trends at FFL this year was the presence of FIVE country music stars, all living with type 1 and some announcing a variety of industry partnerships. First, news hit on July 6 that country music star and D-peep RaeLynn had teamed up with Novo Nordisk and JDRF to create a unique series of books for T1D youth ages 2-24. She was on hand at the FFL exhibit hall and performing, along with country singer Eric Paslay, who announced that he's partnering with Dexcom and also performed for FFL attendees. The CGM company actually used "Rock on with Dexcom" as its conference theme, handing out T-shirts featuring that tagline.
Longtime D-friend and country singer Crystal Bowersox was also at FFL again, this year announcing that she'll be collaborating with Lilly Diabetes as the company's newest D-celeb spokeswoman who'll be making the tour rounds of diabetes camps in the U.S. Additionally, two other country stars -- the multi-talented George Canyon and Amanda Jo -- were also attending FFL this year.
Along with these singers, T1D IndyCar racecar driver Charlie Kimball was also on the scene signing autographs and posing for photos with attendees.
Some Sacred Space
In addition to the more traditional sessions, I attended several unique interactive sessions, exclusively for green bands, moderated by FFL staff members who are type 1 peeps themselves. The first one I attended was on the challenges of being a parent when you have diabetes. I can’t tell you anything about this session, because the rules were that everything said in the room stayed in the room. It was a sacred space for sharing. For laughing. For crying. I found it so powerful that I blew off my planned schedule (sorry Bennet and Christel) and attended another interactive session on complications. It was, in a word... mind-blowing.
On the final day I made time to attend a mixed session for couples, even though my infinitely better half was at home, as this was a work trip for me. Hearing “mixed marriage” couples speak openly and frankly about the challenges of the love triangle that diabetes creates was, at times, completely hysterical. But it also gave me perspective on how challenging it must be to be married to one of us.
Meals with the Family
At FFL, people with diabetes pretty much run the world. Or at least the Orlando World Center Marriott conference center, which is one of the largest in the world. And never was that more clear than at mealtimes. All the meals were pre-carb-counted, a nearly year-long effort by staff nutritionist and fellow type 1, Kristen Seiz.
New this year, Seiz told me, was the sample plate for each and every food item on each and every buffet line, showing the portion size that the carb counts were based on. I saw one teenage boy with a heaping plate of mac and cheese, no doubt his normal serving size, but easily 10 times the size the count was based on. At least with the sample plate he could adjust the math for his bolus.
A Lifetime of Memories
Like crickets at twilight, Dexcom alarms were the serenade that accompanied every event. Grimaces and laughs followed fingersticks. Meters were shared when batteries died. Baskets of glucose tabs were everywhere. Speakers sometimes had to pause to check their blood sugar.
And yet we were vibrant. If you were a complete stranger dropped in the middle of this conference, you’d never in a million years have guessed that it was, at its core, a conference about the most challenging and dangerous of all chronic illnesses. You wouldn’t see the fear, or the creeping complications. All you would see were healthy people of all ages, smiling and laughing a lot.
Event brochures boasted the tag line: “This is a conference you won’t ever forget!”
How true! This conference most definitely delivered.
It was a combination of a shot in the arm and a breath of fresh air. I’m reinvigorated and ready to take up the fight once again. Only one question remains:
Is a once a year dose of this medicine enough?