What a remarkable event!
This marks the 3rd Children with Diabetes event I have attended and I am continually amazed at the quality of the programs, the friendliness of everyone involved, the meals that specify carb counts and portions, as well as gluten-free options, the unique wristbands that identify those with T1 and those who do not have T1, and the glee and excitement among the kids, some of whom have been attending for the past 24 years, since it was founded in 1995.
The highlight for me, for the 3rd year in a row, was the keynote address by Dr. Ed Damiano, professor of biomedical engineering at Boston University and founder of Beta Bionics, developing the first dual hormone (and at this point, possibly the only one) closed loop insulin delivery system. I can’t wait! They expect to first delivery an insulin-only device in 2019 … with the dual hormone (insulin and glucagon) system in 2022. Is it 2022 yet?????
Why am I so excited about this? Well, it makes so much sense to me! An insulin only pump is like driving a car with only a gas pedal … the best you can do is take your foot off the pedal. Give me the brake!!! That’s what the glucagon is for … and that’s how a non-diabetic body works! Furthermore, the algorithm that Dr. Damiano’s group has developed seems effortless! You enter your body weight ONCE. You DO NOT enter ratios and pump settings. And then, when you eat, you simply tell it whether your meal was tiny, small, regular or large. It will learn what that is. NO MORE CARB COUNTING!
What more information? Beta Bionics Introducing the iLet
And from his dad:
It was an absolutely amazing experience not only for Kaiden and me, but for others who I spoke with as well. Kaiden made so many friends and came home with a thirst to manage his diabetes even more himself, hopefully it sticks!
Personally, I loved meeting people who had have the same drive and thirst for better management as myself. I spoke with many parents who are struggling with management and am now speaking to them via email or text to hopefully do what I can to help them out. I discussed technology with those that fear the transition to pumps and talked about methods for fighting insurance companies and school districts with many who are struggling with that issue as well.
Children with Diabetes was started in 1995 by Jeff and Brenda Hitchcock when their 2 year old daughter Marissa was diagnosed with T1d. “The idea was — and continues to be — to share experiences with other families, so that together, we can all make a difference in the lives of everyone living with type 1 diabetes.” It’s quite an undertaking, to put on these conferences all over the world, many times a year. When I asked Jeff what motivates him to keep going and working so hard, he replied, “Motivation is easy: my daughter has type 1 diabetes. We all do what we can to make a difference.”
Laura Billetdeaux is VP of Education and Programs with CWD and has been involved since the very early days, when her son Sam was diagnosed with T1 in 1998. She started the Friends for Life Conferences, almost by accident, in 1999, asking families living with diabetes if they wanted to join her on vacation in Orlando … 110 families (550 people) said yes, and the first conference was born. When I asked her what motivates her to continue these amazing events, her answer took my breath away. “I’ve been thinking about your question all day, trying to come up with some eloquent answer. I keep coming back to something that Barbara Kingsolver wrote many years ago, and it has stuck with me. “What keeps you going isn’t some fine destination. It’s just the road you’re on, and the fact that you know how to drive.” This is a road we know how to drive. It makes such a positive impact on people’s lives. Why on earth would we do anything else? You’re right. It’s exhausting and draining, and I usually feel pretty ragged for a day or so after each conference. The flip side to that? It’s also enormously energizing and tremendously satisfying to watch the difference that one single day of FFL makes in the life of a young person. You can watch it happen. It’s tangible.”
Thank you Jeff and Brenda and Linda and the many others involved in staging these heart-warming and so very meaningful and impactful events.
And from our roving reporter/guest blogger, Priscilla Faubel, comes this report (Thanks so much Cilla, and your amazing husband Warren, dear Gayle and husband Glen!)
Earlier this month I was fortunate enough to attend Friends for Life in Anaheim. When I became a T1D, comrades in arms were few and far between. But at Friends for Life, TID children made friends for life and so did their parents. I can’t begin to relay the level of expertise and the warmth and support that this conference confers upon attendees. Not to mention that the food was pretty darn good and had carbs counted as well as a separate offering for those with Celiac.
I’d like to share a little about 3 of speakers who gave me hope.
The first speaker was Ed Damiano. I heard him speak a few years ago for the first time and broke out in tears of joy. He offers the ray of hope, the artificial pancreas I have been waiting for. Keep your eyes on his company Beta Bionics, Inc. as clinical testing began the middle of 2017 for his insulin only configuration. Hopefully this will be out in the next 24 to 36 months. He is also working on a dual chamber system which would have both insulin and glucose.
Bruce Buckingham, MD is a professor in the Department of Pediatric Endocrinology at Stanford Medical Center and Stanford Children’s Hospital. His research is focused on continuous glucose monitoring in children and closed loop systems. He knows everything about everything. He updated us on all the work being done by the various pump and cgm companies and even the work that Apple is doing. I was taken by the thought of a new kind of infusion set that wouldn’t clog or kink. I just marvel that these incredibly knowledgeable people were right there in the same room as I was… Totally awe inspiring.
The last speaker has been a T1 for 30+ years and was the 2014 Diabetes Educator of the year. Gary Scheiner, MS CDE is the owner and Clinical Director of Integrated Diabetes Services. He and his team specialize consult using the internet of help diabetics get better control. Gary, like Ed and Bruce is one amazing person. I never fail to learn something from him. Did you know if you peel a banana and test your blood it will be erroneously high? Who knew? Gary always has great ideas for making control easier and is great about showing anyone how to read their own glucose results in order to adjust their insulin. I love listening to him because like all the other speakers he such an incredible and giving human being and very uplifting to my type 1 spirit.
Kudos to Jeff and Brenda Hitchcock and all those who worked so hard to make this such a great event!