Back to CWD Activities Report from Friends for Life UK 2013

Friends for Life UK 2013

“Warm and wonderful.” That is how the CWD staff and faculty described the 300+ participants who joined us this past weekend at the Friends for Life UK 2013 conference. This was the 5th Friends for Life conference held in the UK. The event, located at the Marriott in Glasgow, Scotland, brought CWD’s very special brand of education and support to hundreds of adults and children who had never been to a CWD gathering before. We were also very pleased to see so many familiar faces – and so many grown-up children (from the last time we saw them!).

Registration opened promptly at 16:00 on Friday. There was an immediate early rush, followed by dozens of children and adults sporting their brand new Friends for Life navy t-shirts, orange/green/yellow bracelets, and name badges. At 17:30, the first of many carb-counted, delicious buffets was open for dinner! This was followed by a real treat – a bagpiper welcoming the families into the ballroom in a very celebratory and traditional manner for the Welcome Keynote. A big thank you to Rosalind and Martin Carr for arranging this very special touch. CWD Dad Oliver Double – always a favorite at CWD conferences on either side of The Pond – broke the ice for anyone who was still a bit nervous, and he had the audience laughing by the time he finished his first sentence! His rendition of “Think Like a Pancreas” – sung to the tune of “Walk Like an Egyptian” was spot on.

Many thanks to Julia Mattingly, Aileen Hillis, Chad and Scott Kyllo, and Martin and Rosalind Carr for coordinating the registration area on Friday, getting everyone the correct t-shirt sizes and name badges once they arrived on site. A special shout out to CWD’s Michelle Rago, who again this year set up the badge-decorating station near registration!

We are so grateful for the support of our sponsors, including Animas UK, Roche UK, and Medtronic Diabetes UK. . Many, many thanks to all of these companies for their support, enthusiasm, and friendship this past year.

Representatives from the various exhibiting companies also spent the weekend with CWD families, discussing their products and research. Exhibitors included JDRF, TrialNet, INPUT, Merck, and the Diabetes UK. Many thanks to Perrigo Diabetes Care in the U.S. for providing the Dex4 glucose supplies for the entire conference. With all of the exercise and excitement throughout the weekend, many lows were headed off by glucose tabs!

The conference was divided into several tracks for Saturday and Sunday, with the teens, tweens, and elementary aged children all heading off to their own separate areas, the little ones going to childcare, and the adults having both general sessions as well as breakout sessions with more specific topics at both beginning and advanced levels.

The Saturday opening keynote was introduced by Sir Michael Hirst, a very special CWD Friend for Life, the President of the International Diabetes Federation, and also the dad of a daughter with type 1. Sir Michael spoke eloquently and passionately about his family’s experiences, and encouraged every one of us to be advocates for the best possible care for our children. Saturday’s opening keynote, from a Diabetes Dad, continued to set the tone for the rest of the conference. Tom Karlya, aka Diabetes Dad, powerfully and emotionally recounted the story of his family’s journey with type 1. He shared with the audience the beginnings of CWD and Friends for Life, and told the stories of some of CWD’s young people who have changed the world with their energy and advocacy. Tom admitted, “I’ve made more mistakes than anyone” in learning about and managing type 1 diabetes. He encouraged all of us to learn and get involved in some form of advocacy, large or small. And he left every single person with the message, a resounding “Diabetes Just Won’t Do!”

Following the morning keynote, breakout sessions extended the rest of the day. Gary Scheiner – known as a speaker who helps families make practical sense out of the most difficult of concepts – presented three sessions -- Introduction to Pumping, The Highs and Lows of Diabetes, and Managing Sports and Type 1. For those managing type 1 with multiple daily injections, Dr. Fiona Campbell led a discussion about Making the Most of MDI, while Rebecca Thompson presented suggestions for Managing Sick and Stress Days. Emotional support is a key component of Friends for Life conferences. Psychologists Korey Hood and Jill Weissberg-Benchell presented several sessions throughout the weekend, including Avoiding Burnout and Keeping Your Marriage Strong. Korey and Jill also made themselves very accessible to families who sought further discussion and support throughout the weekend.

The Artificial Pancreas, presented by Dr. Henry Anhalt, provided a glimpse of what may well be the future of type 1 management. He talked about the history of the artificial pancreas as well as the status of current and future trials. Many parents reported after the session that this was very exciting news for them, and they were hopeful about this technology being available for their children in the not-too-distant future. The Mums and Dads Discussion groups rounded out the Saturday afternoon schedule. Many thanks to Oliver Double and Tom Karlya for leading the Dads Discussion, and to Jacqui Double and Jackie Jacombs for facilitating the Mums group.

Saturday night… Ceilidh time! This was, by all accounts, a ‘party done right!’ Everyone was encouraged to dress traditionally, and the CWD staff and faculty obliged by wearing kilts (creating a new designation in FFL-ese ... “CWD Men In Kilts”). The Reel Stramash, a local ceilidh band, provided the music and the instruction for those new to this type of dancing. It was great fun – very energetic and exhausting! The best part? Ceilidhs are family events – all ages were on the very packed dance floor, little ones through grandparents. Many thanks to our Scottish families who, from the onset, encouraged us to have a traditional ceilidh as part of the festivities.

Sunday morning and early afternoon were filled with breakout sessions including It’s Not Just a Numbers Game (Joe Solowiejczyk), The Ups and Downs of Growth Hormone (Henry Anhalt), The Sky Is Not The Limit (Douglas Cairns), and Carb Counting Basics and Beyond (Mike Schurig). There were also a number of wonderful discussion groups covering quite a variety of topics: Insulin Pumping in the UK (INPUT and IPAG facilitators), Managing Diabetes in Schools (Jackie Jacombs, Jacqui Double, Fiona Campbell), and Advocacy: How Do I Get Involved? (Jacqui Double, Jackie Jacombs, Tom Karlya). Dr. Bob Bulgarelli led a discussion about stress management, followed by a hands-on group demonstration of meditation and relaxation techniques.

Jeff Hitchcock presented his signature closing keynote, Dancing On The Beach. The story – never old no matter how many times one hears it - recounts the Hitchcock family's story with type 1 diabetes ... how Marissa was diagnosed as a toddler ... how they celebrated milestones such as the day Marissa gave herself her first injection ... how Jeff started CWD as a resource to help her meet other children with type 1. And how she has grown up as a successful young professional (she is an RN and one of the CWD Teen Program leaders) with an incredibly bright and healthy future in front of her. This year – by popular demand – VERY popular demand – the presentation included wedding pictures. Marissa Hitchcock married Adam Town (yes, CWD Tweens Adam Town!) last May, and is now Marissa Town. Jeff closed his session by announcing that this fall, he is going to be a new grandpa.

The sessions for all of the children – from the tiny ones through the teens – were interesting, fun, and interactive. The teen group spent Sunday afternoon offsite on a bowling excursion. Fitness Instructor Harold Sanco once again joined our staff from the US and worked with all of the children’s age groups. His message to kids of any age is this: exercise will help you to be healthy. Harold worked with all of the age groups – even the youngest ones, and as always, he was a hit with the children!

Most sincere thanks are extended to the Youth Program leaders and Staff. These include – for the elementary program – Lauren Lanning, Sunshine Abel, Laura Bailey, Aileen Durkan, Mark Hillis, Kim Kaar, Michelle Rago, Jo Stroud, and Mike Welsh. For the tween program, leaders included Adam Town, Carolyn Billetdeaux, Paul Cheverton, Melissa Pawlowski, Deb Ruppert, and Kenny Rodenheiser. Teen leaders included Natalie Bellini, Jim Vail, Marissa Town, Neil Benchell, Martyn Carr, Sam Billetdeaux, and Bob Bulgarelli. Childcare staff included, Mary Bulgarelli, Audrey Greenfield, Chelsea Meredith, and Deborah Glassborow. Many thanks to all of you for your incredible organization, energy, and positive attitudes. Additional thanks to Carolyn Billetdeaux and Jill Weissberg-Benchell for coordinating the Siblings Discussion Groups at each age level. The kids and parents loved all of you.

Sincere thanks are extended as well to Ashley Head and Chad Kyllo, who coordinated the sponsors and exhibitors area. In a fairly small space, with hundreds of people exploring the area, you made everything work. Well done.

Kudos and a big thank you to Scott Kyllo, who flew all the way from British Columbia, Canada, to take charge of All Things AV/IT. Scott coordinates the presentations and tech needs for all of the CWD Friends for Life conferences and is simply indispensable.

CWD dietitian Mike Schurig once again spent months pulling together some great, healthy menus (and portion sizes and carb counts) for all of our meals. He created a delicious gluten free buffet at each meal and snack break for those who needed them. It always amazes the hotel management and dietary staff that we spend so much time and effort on this particular facet of our conferences ... but it is probably the most important thing that makes families feel safe about spending the weekend at a CWD event. So, kudos to Mike for another job well done, and many thanks to the Chef and staff at the Glasgow Marriott for working so diligently with us on this!

CWD would not be able to hold conferences at all if not for the continued and consistent generosity of our sponsors. Many thanks to our UK Sponsors, including Animas UK, Roche UK, and Medtronic Diabetes UK. Their generosity in supporting the Friends for Life UK conference and CWD families, as well as their passion for helping our kids and everyone with diabetes to lead a full and healthy life is extraordinary.

Finally, a big hug to the many, many people who helped out with this conference. You know who you are. We couldn't do this without you, and you have our most sincere thanks.


Oliver Double once again welcomed the FFL 2013 families
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Sir Michael Hirst, President of IDF, opened the conference
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A piper played as Olly entered
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Saturday's Ceilidh filled the dance floor
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Like every FFL UK, kids enjoyed face painting
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