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Friends for Life: A Place Where No One Feels Alone, for Just about a Week

CWD Founder Jeff Hitchcock and wife, BrendaSeeking to connect with other parents of children with type 1 Jeff Hitchcock (pictured here with wife, Brenda) started a website called Children With Diabetes that continues to serve T1D families more than 20 years later. There are few gatherings that I know of like the Children with Diabetes’ (CWD) Friends for Life (FFL) Conference, which took place earlier this month (July) in Orlando, Florida. The organization, like so many great groups, started with a well-intentioned parent. A man named Jeff Hitchcock who was looking to connect with other parents of children with diabetes. Jeff turned on his computer in 1995. Turns out, he ended up connecting the world. Since that day more than 20 years ago Jeff and the Children With Diabetes website have become the go-to authority on all things diabetes. 

 In 1999, Laura Billetdeaux, a mom of a T1D, sent an email to the ’listserve’ of the CWD group asking if anyone from the group would want to meet her in Florida—she’d be there for a week, on vacation. Turns out that 550 people showed up and the FFL Conference was born!
 
Together Jeff and Laura assembled one of the most successful family educational weeks on record.  I attended the very first one and am still going strong 19 years later.  In simple terms, CWD saved my daughter's life.  The knowledge we gained there laid the foundation for both my children with diabetes.  What can and should work, and how to approach any situation with the wisdom we had in their most formative years, was mostly due to what we learned at these conferences. 

All In One Place

Each year at the event one can listen and hear about the newest, latest and greatest in everything from treatments, to research, to the social-psyche aspects in the world of diabetes.  Various learning tracts are available for almost every age group from child care to grandparents.  School topics, open source glucose control, insurance matters, social media, pregnancy, dating, going to college, research advances, moms and dads’ discussion groups, meetups, and those are just some of the programs for adults.  Kids, teens, and tweens each have their own track of education as well. 

I counted 13 different social event activities, as well as visiting Disney Characters, and trips to the Disney Theme Parks for some, and a full-fledged/active Sports Central that never seemed to close, not to mention an incredible banquet that was kicked off by Docu-Diabetes IV—the 5 top videos of living with diabetes, related in a minute or less created by attendees and voted on by peers. Those top 5 videos are presented during the huge banquet held on the Thursday evening of the conference.  This year, in total, families submitted 16 videos for judging.  

 The most interesting aspect of the videos is that the must relay a person’s life within a minute or less.  How they is interpreted and presented is up to the filmmaker, of course.  I think the single most identifiable feature in each is that the subject matter is completely relatable to the viewer. We all make mistakes with this disease and when we can look and laugh at something totally relatable, it allows that small window to say that we are just like everyone else as we try to manage this disease.  Videos can be poignant, humorous, thought-provoking, and when they were viewed this year they were well received by the enthusiastic crowd.  

 
Ten truly inspiration speakers—all living with type 1—also joined for the week. Their remarkable stories ranged from what it’s like to play on a  Super Bowl Championship Team (Kendall Simmons, Pittsburgh Steelers) to what it’s like to cheer for a Stanley Cup Winner (Courtney Duckworth, Washington Capitals Cheerleader), to being an entertainer with type 1 (Country Singing Star Raelyn). A T1D by the name of Will Cross even climbed Mount Everest.

The message that came through loud and clear to the kids was…their only limitations are their own imaginations; diabetes should NOT BE what defines them.  And some, like celebrity chef Doreen Colondres, who does not have T1D but came to help shared some delicious blood-sugar friendly Strawberry Cheesecake Lollipops for everyone to enjoy.

 As one looks through the program guide it’s clearly obvious that the amount of people with professional credentials after their names is evidence that this is a conference that is like few others both in terms of sheer number of activities and the expertise, knowledge and experience of those who are involved.  And if they did not have professional credentials what they did have is a huge amount of world experience that can teach and inspire. 

The event also has an exhibit hall full of all of the top names in the diabetes world with a few missing (which for the life of me I could not figure out as to why; talk about a captive audience).  I attended the American Diabetes Association Scientific Conference a few weeks prior to Friends for Life and it struck me as so unique that those participants I saw a few weeks earlier representing their companies in stiff collars and corporate dress are now in jeans and sneakers.

Here, more than anywhere else, that those who work for diabetes companies are given the incredibly-unique opportunity to get close to the families and really see first hand what it’s like living day in and day out with this insidious disease day in and day out.  But yet with all of the professionalism, activity, education, product demonstrations, social activities, and inspiration that got my attention it’s not the defining aspect to this conference. 

 No, not by a long shot. 
 
That became evident at the farewell breakfast where young kids held hands with other children the hugging never stopped. THAT’s what made the week so special. The tears that parents not only wipe from their children’s eyes, but the tears they wipe from their own because saying goodbye is never easy when one feels so comfortable so……not all alone….so connected. 

Other entities may certainly offer some of that in the guise of events and camps, but when it comes to the entire family unit, few do it as well and as completely as Children with Diabetes and their Friends for Life conference. 

 Friends for Life…indeed.  Bravo all. 
 
I am a DiabetesDad. 
 
 

 

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