20 Years of Diabetes Magic at Friends For Life
All around, kids and adults exchange hugs and laughs. There are abundant smiles, emotional moments, and diabetes device flashes.
There’s a sense in your gut that you are part of a community, a club, a family... that people living with type 1 are a tribe who understand and look out for each other, no matter our differing politics or where we hail from, our brand of advocacy, or even how long we’ve been touched by this illness.
That is the magic of the annual Children With Diabetes Friends For Life conference, going strong for 20 years now each July in Orlando, FL. It began as a spur-of-the-moment gathering, with Michigan D-Mom Laura Billetdauex putting out a call on the then-new CWD forum online that her family would be taking a Disney Orlando vacation in July and welcomed anyone who might be interested in tagging along. Remarkably, 550 joined in!
Within a year, the FFL conferences became official and nabbed an initial sponsor in TheraSense (later acquired by Abbott), and there’s been a meeting in Orlando ever since. The group now also hosts various FFL events around the world, that have collectively brought together over 50,000 people.
For this milestone 20th FFL Orlando conference, more than 2,000 people came together: 338 adults sporting green bracelets to indicate some form of diabetes, 285 of those living with T1D themselves, and 304 kids and teens living with type 1.
Not just for kidsNotably, for the first time ever, more adults with type 1 attended than kids with T1D! The event has been moving in that direction for the past few years, we’re told, and adult attendees have already surpassed kids in Canada and other conference venues around the world.
In other words: Don’t make the mistake of thinking the hosting org's name Children with Diabetes means that FFL is just for kids, because it’s not. This conference is for T1 kids, teens, parents, grandparents, adults, their spouses and families – not to mention those with Celiac, as well as caregivers, industry reps and healthcare professionals who may have personal D-connections of their own.
“I'm glad that adults with T1D are finding a home at FFL Orlando,” says CWD Founder and D-Dad Jeff Hitchcock in Ohio, whose daughter Marissa was diagnosed at 24 months old back in 1989. “We need to find a way to reach more.”
I'm a man in my early 40's, and this was my fourth time attending an FFL conference – including my first one in Orlando, and one last year in Canada. Many folks attend religiously year after year, drawn by the incredible support, connections and feeling of community they experience at these unique events. I wish I’d started attending long ago, and that this was available when I was a child or teenager with T1D.
The camaraderie is invaluable.
But more than that, there’s an impressive roster of sessions spread over three days – ranging from the latest diabetes technology and research updates; to presentations on exercise, food, and mental health; advocacy issues; social media and community connections; and so much more.
Hundreds of diabetes learning opps
There are always too many sessions happening at the same time – this year over 110 sessions in total just for the adults, with a handful usually starting simultaneously. I agonized over the choices, because they’re all worthwhile and have dynamic presenters, most of whom are personally touched by diabetes in some way.Advocacy issues and insulin pricing got three dedicated sessions, one being a Saturday morning keynote. I am happy that my wife Suzi had the chance to attend a couple of spouse-specific sessions, one of those being a small interactive group talking about diabetes complications. This one hit home for us because with my 35 years with T1D, I'm experiencing some recent eye issues that have impacted my mindset as well as my relationships.
I also very much enjoyed the several psychosocial-focused sessions that touched on daily life and challenges we face with diabetes. There were some heart-to-heart chats about some very personal stuff. This kind of bold sharing always does a body good, and it's clear to me that our whole community could use more of this type of support.
Along with that, I was fascinated to see a number of useful nutrition and low-carb nuggets presented during sessions this year, really showing how open the CWD is to discussing options that may work for some but not all. It was also notable that the #WeAreNotWaiting Do-It-Yourself tech movement was on full display, with many Loopers using homemade systems in attendance. One DIY session led by OpenAPS inventor Dana Lewis overflowed into a different room and beyond the hour-mark because of all the heated interest.
It's downright impressive how the FFL programming manages to embrace so many different parts of life with diabetes, and truly does offer something for everyone.
Exhibit Hall fun
As always, one of the biggest highlights for many at FFL is the exhibit hall, which is less product-focused than most similar events, but has more fun built in -- from games, activities and giveaways to celebs making motivational appearances. This year brought us “Whack a High” instead of “Whack a Mole,” and an actual NASCAR auto you could climb into. Dexcom was giving out T-shirts with the message “Hey SIRI” to mark the latest feature allowing users to check their Dexcom results via talkable tech. Celebs on the scene included race car driver Charlie Kimball and country singer Crystal Bowersox.
There's always so much to see at the first night's opening event, including a spotlight on CWD's famous Quilt For Life, that remains on display made up of hundreds of quilt squares through the years.
(Our own Amy Tenderich even created a D'Mine quilt square with her daughter for this project, and we caught a glimpse of that in Orlando at this most recent FFL conference!) The huge Quilt for Life has traveled around the country, and was on display in 2006 at the National Mall in Washington D.C. where then Sen. Hillary Rodham Clinton met with diabetes advocates (including Marissa Hitchcock) prior to the annual American Diabetes Association conference.
That history is quite fascinating, all on its own!
In a session run by Beta Bionics, creators of the iLet dual-hormone closed loop, their leader and D-Dad Ed Damiano recapped the history of how he and his team have been at 13 FFLs over the years since 2007 -- and how they've tracked their own progress by the various changes announced at the CWD conference. This was the venue for their big name unveil for "iLET" in 2015 and this year, they showed the newest iterations of their future closed loop system that will hopefully be ready for market by 2022. This year, they also announced a new partnership with UnoMedical for their dual-hormone (insulin-glucagon) infusion sets that will be a part of iLET once it's ready.
A Magical Diabetes Experience
Clearly, I am a fan of these FFL events. But don’t just take my word for it.
There are countless other stories of people saying that FFL has changed their lives, including these recent attendees who were willing to share their experiences:
D-Mom Kara Mills Opp from Georgia: “We made the decision to attend FFL on New Year’s Eve, minutes before midnight. Our daughter was just diagnosed with Type 1, and we were grasping for a new normal for our lives... I’m so glad we took that leap of faith to attend. We thoroughly enjoyed our week and are definitely planning to return again next year. What we absolutely loved about FFL:
- Meeting people all over the country (and world) who understand us
- Feeling at home in a room with beeps and alarms going off all around
- Eating and not worrying about feeding my daughter who was also recently
diagnosed with Celiac
- Learning from all the presenters and hearing all the advances and exciting
things on the horizon for my T1D
The next FFL is already on our calendar. We can’t wait to come back!”
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D-Mom Lisa Brooke from Montana: “My daughter was diagnosed a year ago and I think it may have even helped her more than diabetes camp to learn about diabetes and make new friends. Didn't even anticipate how wonderful it would be for my non-T1 daughter who’s 13. She learned all about Type 1 from the classes and the diabetic friends she met. She met other siblings who had Type 1 and they talked about what is about to go through this experience. We always learn so much and have a great time. I made new friends too. FFL is a lot of fun for the whole family!”
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D-Mom Shannon Sheets from Baltimore, Maryland: “This was our first time... nine months ago my 11-year-old Julia was diagnosed!! She was nervous! It was life-changing experience. We plan on coming back every year! FFL has made us feel like we are not alone and I have learned so much.”
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Adult T1 and D-Dad Randall Barker from West Texas: “I’m going to share this again as it still sticks with me as one of the best moments. Walking the halls Friday this little girl bumps into me & sees my green bracelet, ‘Mister do you have diabetes?’
’Yes, I do.’
‘That’s okay, we can have diabetes together!’ As she proudly shows me her green bracelet. Just the bravery being shown by her is amazing, such wisdom for such a young lady who was probably 5-7 years old.”
We know there are countless other who appreciate FFL, and it's awesome that CWD created an online space where you can share your own testimonial to add to the collection -- not only to express thanks, but to show others in the Diabetes Community how magical and important this conference can be.
We look forward to seeing the magic continue, and as always thanks to everyone who's been a part of this for the past two decades!
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Originally published on Aug. 6, 2019 at DiabetesMine