Back to CWD Activities Report from Friends for Life UK 2012

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This was the week that Hurricane Sandy nearly derailed the Friends for Life conference. With 27 faculty and staff traveling from the U.S., and most coming through airports in the northeast (which were under water), it was uncertain who – if anyone – would make it. We fretted and worried. We re-scheduled canceled flights, and rescheduled them again. And again. We slept in airport lounges awaiting information on airplanes that may or may not arrive. By Friday evening in Windsor, we were thrilled to announce: We made it!

On the eastern side of the Pond, the weekend started out beautifully – with warm and sunny weather on Friday, enough so for the children to play outdoors, families to visit local theme parks, and visitors to stroll through Windsor and perhaps tour the castle. By Friday late afternoon, registration was open, the sponsors and exhibitors were in place, and over 500 CWD parents and children officially opened Friends for Life UK 2012!

For the 4th year, the Beaumont House in Old Windsor was the home of this year's conference. The event was held during the school break for many families, allowing a day or so prior to the conference to visit and sightsee with CWD friends old and new. Conference participants were nearly all from the UK. While many families had been living with type 1 diabetes for quite a few years, there were a handful of newly diagnosed families. And, as is true with every CWD conference, many parents knew each other from the various CWD mailing lists and forums – yet they had never met before this weekend! Everyone was excited, happy, and eager to learn, and the air was buzzing.

At 8 p.m., after a delicious carb-counted buffet of snacks and hors d’oeuvres, CWD Founder and President Jeff Hitchcock welcomed everyone to the opening session, which kicked off with the Friends for Life opening Welcome Session. CWD Dad Oliver Double – always a favorite at FFL – kept the audience in stitches during his standup comedy routine. He then had everyone on their feet for a rousing rendition of “H-Y-P-O” sung to the tune of “YMCA” and – er- choreographed by wife Jacqui and son Tom. It was a great opening act!

Many thanks to Julia Mattingly, Jackie Jacombs, Walter Greenfield, Heather and Scott Kyllo, and Brenda Hitchcock 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 Teen Ella and friends, as well as 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 LifeScan UK (Gold Level), Cellnovo (Silver Level), and Roche UK and Medtronic Diabetes UK (Bronze Level). 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, Funky Pumpers, and the Diabetes UK. Many thanks to DEX4 in the U.S. for providing the 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.

Saturday’s opening keynote, From a Diabetes Dad, by all accounts brought the house down. Tom Karlya, aka Diabetes Dad, recounted his family’s story and the beginnings of CWD and Friends for Life, and 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 ... “Just don’t do nothing!” And he left every single person with the message, a resounding “Diabetes Just Won’t Do!”

The Saturday medical keynote was introduced by Sir Michael Hirst, a very special guest at Friends for Life, the President-Elect 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. Sir Michael then introduced Dr. Tabitha Randell, who presented the NHS Update session. Dr. Randell, instrumental in developing the Best Practice Tariff for paediatric diabetes in England, explained the new guidelines and implications for actual practice. She then took questions from the audience and was available after the session for those with additional questions about how the Best Practice Tariff might affect the care in their current clinic.

Following the morning keynotes, 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 two sessions -- Strike the Spike, and Introduction to Pumping. Natalie Bellini – also known for practical sessions and her humorous and engaging presentation style – presented information about Infusion Sets and Sensors. She then combined efforts with Marissa Hitchcock and Jill Weissberg-Benchell for a discussion about Parenting Your Teen With Type 1. Lesley Jordan and her team from the INPUT group led a discussion session entitled How to Get the Best Pump Support. By request, the Mums Discussion Group and Dads Discussion Group were held on Saturday vs Sunday; most parents reported they really could have used about double the time to continue discussions – we will try to plan for that next year! Adults with type 1 and Grandparents also had discussion groups with CWD favorite Joe Solo (Solowiejczyk).

Several speakers from last year were kind enough to join us once again at this year’s FFL. Dr. Peter Hindmarsh (aka The Professor) addressed a new topic at FFL: The Ups and Downs of Growth. This is a topic of particular interest to parents of teens and growing children who seem to require different amounts of insulin on a daily basis! Parents reported that they much appreciated the Professor’s humour in discussing a sometimes touchy and challenging topic. Rebecca Thompson’s Managing Sick and Stress Days was practical and interactive. Sick days (duvet days) happen to all of us, and it’s best to have strategies in hand before they happen. And – who doesn’t have at least some stress in their lives, no matter what age? Enough said…

Francesca Annan, a dietitian known for her expertise in figuring out a balance between sports and type 1, led two sessions about precisely that topic. Part 1, a presentation, was on Saturday afternoon and was followed by a discussion group on Sunday morning for more interactive follow-up. Francesca also spent time with the tween group on Saturday, in a hands-on session called Carb Counting Mall Food. She remarked that she was impressed by the carb-counting acuity and skill of so many of the tweens!

Following dinner on Saturday night, nearly everyone dressed up in fancy dress ... it was party time! The Family Disco in Hanover Ballroom was absolutely packed, and the DJ’s music was – hmmm – very fun (and loud). Many thanks and kudos to Harold Sanco (aka Human Caffeine) for keeping the dance floor hopping and keeping up with the energy of all the CWD children! The teens had a Movie Night option on Saturday evening, and many of them dressed in comfy onesies and headed to the Balmoral Lounge for movies, munchies, and good company. Many thanks to Bob Bulgarelli, Korey Hood, Mike Schurig, and Joe Solo for offering adult support to the teens that evening!

Sunday morning, Peter Hindmarsh presented the morning’s keynote Update on the NICE Guidelines. While he admitted to the audience at the beginning of the session that the “updates” would take about 5 minutes, there actually was a lot to present and discuss, and there were many questions. As always, The Professor was warm, conversational, and engaging, and feedback from parents was very positive. Following the morning break, Dr. Hindmarsh and Rebecca Thompson led a follow up session to the discussion group of 2011. They’d come away with questions and suggestions from parents at last year’s FFL, and had promised to return with answers and an update. Well done.

Also on Sunday, Gary Scheiner presented Advanced Pumping Techniques and Making Sense of Sensor Data. Psychologists Korey Hood and Jill Weissberg-Benchell led a discussion about Avoiding Burnout, and Francesca Annan led the session Carb Counting Basics and Beyond. Jackie Jacombs and Jacqui Double engaged parents in the discussion group Managing Diabetes in School, and partnered with Tom Karlya for the discussion Advocacy: How Do I Get Involved? Sunday’s research feature was Mark Peakman’s very fascinating Dealing With the Immune System: Big Hammer or Negotiation? And finally, Joe Solo rounded out Sunday’s programme with a discussion group for single parents, and his very famous It’s Not Just a Numbers Game. Parents reported after this session that, even though they may have heard Joe present this a time or two in past years, they heard new things this year because their own experience was now in a different place… true for quite a few of the sessions.

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. Congratulations, tears, cheers, and tremendous applause were definitely in order!

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 (thank goodness, no Thorpe Park this year – the weather was dreadful!). 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, Grace Grande-Cassell, Jen Hanson, Becky and Sasha Jacombs, Michelle Rago, Jo Stroud, and Kaitlyn Karlya. For the tween program, Carolyn Billetdeaux, Adam Town, Paul Cheverton, Justin Abel, Kelsey Martin, Liz Gillum, Melissa Pawlowski, and Kenny Rodenheiser. Teen leaders and staff included Natalie Bellini, Jim Vail, Marissa Hitchcock, Deborah Glassborow, Martyn Carr, Deb Ruppert, Sam Billetdeaux, and Bob Bulgarelli. Childcare staff included Jana Zens, Mary Babin, Shayne Weldon, Audrey Greenfield, Lydia Jenner, Lara Wann, Claire Matthews, Niki Galliford, Meghan Jones, Jill Karlya, Chloe Gillum, Aileen Hillis, Rosalind Carr, Jennifer Tollit, and Helen Rodio. Many thanks to all of you for your incredible organization, energy, and positive attitudes. The kids and parents loved you.

Sincere thanks are extended as well to Ashley Head and Terry Jacombs, who coordinated the Sports Central activities – and very appropriately bailed on Sunday with the cold weather and storms! It is so important that we offer the children the opportunity to play outdoors when the weather is cooperative. We’ll hope for better weather in August of 2014 when back at the Beaumont House!

Kudos and a big thank you to Scott and Heather Kyllo who flew all the way from British Columbia, Canada, to take charge of All Things AV/IT. They coordinate the presentations and tech needs for all of the CWD Friends for Life conferences and are 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 Beaumont 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, LifeScan UK, Cellnovo, 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… and to those of you who offered to help out with the conference when Hurricane Sandy was looming. You know who you are. We couldn't do this without you, and you have our most sincere thanks.


"H - Y - P - O" (sing it!)
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CWD kids and parents sure do love Joe Solo
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Sir Michael Hirst, President-Elect of the IDF, spoke with families
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The tweens enjoyed a break in the weather and took Sports Central outside
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One CWD teen is involved in closed-loop research
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Teens traveled off site for bowling on Sunday
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The elementary kids explored their feelings during arts and crafts
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