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FFL Orlando 2018 Horiz X

Report from Thursday

Thursday kicked off with the Richard Rubin Memorial Opening Keynote and Breakfast, sponsored by Lilly Diabetes, and ended with ‘Welcome to FFL Island,’ i.e., the Family and Friends Banquet, sponsored by Novo Nordisk.

In his keynote presentation, legendary mountain climber and adventurer Will Cross asked the audience, “What’s your Everest?” He challenged every person in the audience to identify a goal that perhaps seems far away or unreachable – an Everest – and to work every day towards attaining it. Following Will’s keynote and the subsequent coffee break, everyone headed into breakout sessions.

Advocacy sessions were featured on Thursday, with a discussion about Affordable Access to Insulin, a presentation about ‘how to help diabetes win’ in an election year, and a discussion about Advocacy Hot Topics. Advocacy sessions are in their second year of the FFL curriculum, and most pertinent in the current healthcare climate. Many thanks to T1 Today Board Members Stewart Perry and George Huntley for coordinating the advocacy sessions.

Quite a few new sessions were featured on both Thursday and Friday this year. There were several sessions relating to the artificial pancreas and DIY looping. CWD sponsors Diabetes Research Institute and Foundation, JDRF, ADA, Bigfoot Medical, and Beta Bionics, each presented an update relating to their research and technology. In response to last year’s feedback requesting more time with Dr. Stephen Ponder, he joined us for two sessions about Sugar Surfing. Adam Brown of diaTribe presented a session on Diabetes Tools and Apps and also spoke about the concepts included in his book ‘Bright Spots and Landmines.’ In all, there were 40 brand new sessions in the adult program.

As with all FFL conferences, there was a strong psycho-social component to FFL Orlando, present in all age groups. Psychologists Julie Gettings, Marisa Hilliard, Korey Hood, Jessica Kichler, Maureen Monaghan, Diana Naranjo, Laura Smith, Rachel Wasserman, and Jill Weissberg-Benchell presented sessions, facilitated discussion groups, and lent experienced listening ears throughout the week.

FFL included a handful of sessions with a legal focus. Leigh Fickling presented a session to parents on Accommodations in College (for parents and teens), and then shifted the topic a bit in a workshop about accommodations in college, graduate school, and beyond. Two additional sessions focused on legal rights of a person with type 1, as well as information about one’s rights when stopped by law enforcement.

The Emerging Adults (EA) track continued this year, sponsored by Insulet. This track is specifically intended for those who have recently graduated the teen program or who are in the 18-20 age range and just making their way into the adult world. These sessions were on both Thursday and Friday, and covered topics such as Advocating for Yourself, Navigating the Nutrition Maze, Insurance for Young Adults, and Transition from Pediatric to Adult Care. The Adults with T1 track was also sponsored by Insulet and included sessions relating to diabetes beyond the college years. Topics included dealing with burnout, parenting as a person with type 1, and planning a pregnancy. There was also a discussion group – the Safe Zone – for significant others. Adults with type 1 continues to be our fastest- growing segment of Friends for Life. We love to hear your ideas for sessions and discussion groups – please keep sending them!

The Grandparents Program featured several well-attended sessions on Thursday and Friday, including the “Common Fears Discussion” and “Reclaiming Sleepovers and How to Avoid Diabetes Emergencies.” As a complementary program to the Hands On Pump, Pens, Glucagon and Meter Training for caregivers on Wednesday, these sessions provided lots of concrete instruction and coaching. The grandparents had some great questions! CDE Heather Speer and her team did a wonderful job of teaching, encouraging, and hands-on-helping Grands and other caregivers as they learned basics and beyond. Grandparents, we’d love to hear your ideas for new sessions next year!

Thursday’s youth program included sessions for elementary (ages 6-8), tween (ages 9-12), and teen (ages 13-17) groups. As well, childcare was provided for our youngest participants. CWD’s Youth Program leaders have been doing this for a long time, and they pulled together the very best in terms of what activities would best lead to the learning objectives. Yes, the kids always have fun, and yes, there is always a detailed plan behind the activities! Many thanks to the leaders and to the age group program staff, who kept everything running smoothly on Thursday and Friday. Also, a big thank you to Tandem Diabetes Care for sponsoring the Elementary Program and the Gregg Family Foundation for supporting the Teen Program.

Sessions ended promptly at 4:45, and it was time to set up and decorate for the Family and Friends Banquet, once again so generously sponsored by Novo Nordisk. This year’s theme was "Welcome to FFL Island," and both kids and adults wore their best (and most fun) island garb to the event! CWD Mom Teresa Littlefield and her team of 25 volunteers spent just short of an hour turning the Coronado Ballroom into an island paradise! Diabetes Dad Tom Karlya was once again Master of Ceremonies for the evening.

Prior to FFL week, CWD kids and adults had the opportunity to submit a one-minute video for Docu-Diabetes IV (aka the FFL Oscars) coordinated by CWD’s Ben Stroud, Tom Karlya, Kevin Covais, and Amanda Borges, who all work in the film industry. These short videos were viewed and voted on by a Wednesday FFL audience, and then the winning videos were shown during the Banquet. They were realistic, poignant, sometimes funny and definitely spot-on! Congratulations and well done to all who submitted videos.

As the evening program began, Jeff Hitchcock presented the 2018 Hitchcock Distinguished Service Award to Dr. Jamie Wood. Jamie has been part of the faculty at Friends for Life conferences in Orlando, Anaheim, and Falls Church, presenting on a variety of topics. She is also part of the leadership of ISPAD, an organization that helps kids with type 1 throughout the world.

Jeff then told the story of the first FFL Unexpected Hero. It was back in 2004, and he was a CWD dad who jumped into the pool to rescue a CWD mom who also had jumped into the pool to rescue a child who didn’t know how to swim. The mom didn’t know how to swim either. Every year since then, CWD has presented an Unexpected Hero Award to someone who has gone out of their way to do something extraordinary for CWD. This year’s award was presented to Rich and Carolyn Meredith. Rich and Carolyn are from St. Petersburg, Florida, and they manage CWD’s storage units in Orlando on a year round basis. They do so much more than that, however. Whenever anything ‘Orlando’ is needed, they’re there. And beginning about 3 months prior to FFL, their garage, living room and dining room become CWD Central. They are wonderful friends (for life), and we are so thankful for them!

CWD’s VP of Education and Programs Laura Billetdeaux then took the stage. She told the story of the first CWD conference in Orlando and how she and Jeff so misjudged the numbers that CWD would have gone out of business simply paying the conference bill. Laura’s primary Disney connection, Marty Kamrada, stepped up to save the situation. He said, “I’ll tell you what. If you come back to Disney’s Coronado Springs in 2003 for your next Orlando conference, we will make this situation go away.” And that was that. Disney – and Marty - have been our Orlando partners ever since. As Marty prepares to retire this September, CWD wanted to thank him and recognize his help and friendship over the years. We presented him with the 2018 Friend for Life Award.

Laura then told the story of TeamCWD, which started 2018 with a goal of $15,000, quickly modified to $25,000, and ultimately raised $27,000 at Disney’s Marathon Weekend in January. Nearly two dozen TeamCWD runners were present for FFL. We brought them on stage, recognized them for their running and fund-raising efforts as well as their friendship, and presented each with a CWD Challenge Coin.

Next up: the slide show… always a highlight, always emotional. This year, the slide show featured first timers, FFL faculty and staff, and of course friendship!

Once again, we were extraordinarily fortunate this year to have RaeLynn join us for the banquet evening! RaeLynn is an exciting country music performer and songwriter who has had type 1 for over a decade, and whom we initially met on The Voice. She invited the kids onto the dance floor and performed a wonderful and very moving half-hour set. Most of the kids knew the lyrics and sang along. Thanks, Novo Nordisk, for bringing RaeLynn. She is much-loved by her FFLs!

And with that – the party was on! DJ Miles and Terra invited the sponsors onto the dance floor for a warm-up dance, and then worked their usual magic with the crowd, the music, and the dance floor. As an added bonus, Mickey and Minnie, Stitch, and Goofy visited the banquet and stayed around for photos, meet-n-greets, and even dancing! All in all, an energizing, emotional, and spectacular evening.