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  Back to CWD Activities Report from Friends for Life UK 2009

Friends for Life UK 2009 Logo

Supposedly, it rains a lot in the UK, especially in the summertime. The weekend of August 14-16 was picture perfect, though. The unexpected sunshine combined with the warmth of 500 new friends made the first Friends for Life UK conference an absolutely amazing experience. Or – as our UK CWD families reported – ‘it was a brilliant weekend!'

The Beaumont House in Old Windsor was the home of Friends for Life UK. Conference participants came from across the UK. There were also a handful of families from the US as well as a few families from other European countries. While many families had been living with type 1 diabetes for quite a few years, there were also some newly diagnosed families – one as recently as two weeks ago! About a quarter of the participants indicated that they currently use insulin pumps, and a dozen or so families indicated that their children also use continuous sensors. Everyone indicated they were eager to learn and share their experiences, meet others sharing the same challenges every day, and they were very excited about participating in Friends for Life!

The conference began on Friday evening, as registration and the Exhibit and Sponsors areas opened in conjunction with a wonderful BBQ dinner. The Founding Sponsors of the conference included Animas/LifeScan and Medtronic, while the Charity Partner of the event was JDRF UK. Many, many thanks to them for their support in helping us launch this first Friends for Life UK event – their support and friendship has meant a great deal over the last year as we worked together to shape this event.

Representatives from the various exhibiting companies also spent the weekend with CWD families, discussing their products and research. Exhibitors included D-GAP (research), Thorpe Products, INPUT, and BBI Healthcare. Many thanks to BBI Healthcare 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!

Many thanks to Julia and Ed Mattingly and Brenda Hitchcock for coordinating the registration area, getting everyone the correct t-shirt sizes and ponchos (just in case!) once they arrived on site, and many thanks to Michelle Boyt for serving as the information checkpoint for all of us who were new to the area!

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 opening keynote by Richard Rubin was called "Welcome to the Family." Dr. Rubin has been a presenter at every Friends for Life conference in the US. He is a CWD dad himself – with a grown son with type 1 – and with this presentation, he wanted to welcome everyone in the room to the world of CWD conferences. With stories and photos, he told the story of how CWD began in 1995, how conferences were added in 2000, and how the CWD community has grown into the education and support network that currently exists. Friends for Life UK was the first CWD conference outside of North America, and we all opened our arms wide to encompass our new family members!

Dr. Rowan Hillson, National Clinical Director for Diabetes, presented the next Keynote session of the morning, "Diabetes in Children and Young People: Best Practice." She emphasized her belief that "everyone with diabetes deserves the highest standards of personalized diabetes care, no matter where, when, or by whom they are cared for." Dr. Hillson explained the structure of the health care system in the UK, and also explained the current NICE guidelines. She very graciously accepted questions from the audience and was available after the session for continued discussion with those who still had questions for her.

Following the morning keynotes, breakout sessions extended all afternoon. Speakers included Dr. Reman McDonagh (Using the Internet to Manage Your Diabetes), Betty Brackenridge (Sick Day Management); and Dr. Fiona Campbell (Why We Pump). The sessions – each with a different topic and emphasis – were all well-attended by parents who had lots of questions. Again, each of the speakers very graciously spent time after the sessions answering questions (and many of these questions and topics continued as dinner conversation later in the evening!).

One of the final sessions of the afternoon included a Moms Discussion Group, led by CWD's Lauren Lanning, Michelle Rago, Jackie Jacombs, and Betty Brackenridge. The room was packed with moms who were eager to share their challenges and experiences, and the moms divided into subgroups to better focus on the topics of greatest interest. The Dads Discussion Group next door, led by CWD's Ashley Head, Peter Megaw, and Richard Rubin, was the largest and most interactive group of dads at a CWD conference – ever! They also discussed a variety of topics and challenges – and at the end of the session, many commented that they could have used an additional hour to continue the conversation (that is a great suggestion for next time).

John Davis, considered by many as the leading advocate of insulin pump therapy in the UK, led the final presentation of the day, "Getting a Pump in the UK." John was joined by Hadleigh Stollar, the Programme Manager for the Insulin Pump Therapy project with the NHS Technology Adoption Centre, as well as several others who are active in insulin pump advocacy in the UK.

Dinner on Saturday night was themed - the "Witches and Wizards Dinner." Children and adults alike dressed up and enjoyed a delicious BBQ dinner, some fun outside (the weather was still warm and sunny and the children loved running around the grounds all dressed up!), and then some great camaraderie and conversation later in the evening. The teens had a very special event on Saturday evening – a Teen Dance complete with an excellent DJ and a ‘just big enough' dance floor (every single teen was on the dance floor – it was crowded!).

Sunday morning began with a look at technology via Dr. Bruce Buckingham's session "Pumps, Sensors, and New Technology." At the beginning of the session, Dr. Buckingham polled the audience regarding how many had children wearing pumps, wearing sensors, and using which types of insulin. He indicated that he was very encouraged by how many families were embracing technology and making the effort to stay on top of the cutting-edge technology! After the presentation, many parents commented that it was very helpful to them to see the data as well as the very practical case studies of how technology such as continuous sensors is applied to ‘regular families like ours.'

Following the keynote, parents had several choices for breakouts. Jacqui Double led a very inspired and practical discussion of "Managing Diabetes at School." Dr. Kim Kelly presented a technical look at how glucose works in and how it can damage our bodies in his discussion of "Glucose: The Good, The Bad, and The Ugly." Dr. Rubin, in "Diabetes Overwhelmus" (which is always a favorite at conferences), encouraged families to keep moving forward, small steps at a time even on the hardest days, and reinforced that it is ok for parents and kids to feel overwhelmed by the day to day necessities and challenges of type 1 diabetes. Joe Solowiejczyk led the final discussion before lunch, "It's Not Just a Numbers Game." Joe presents this session at nearly every CWD conference – he wants parents and kids alike to understand that having type 1 diabetes is about so much more than numbers. Joe shared video clips from Day 1 at the conference – video that showed the joy of the children learning together, supporting each other, and having fun!

During the 90 minute lunch break, many families took the opportunity to go outside, enjoy the sunshine, and let the children run and play. Did we mention that the weather really cooperated this weekend!

Afternoon sessions included several breakouts right after lunch. The JDRF Research Update featured Dr. Roman Hovorka and Dr. Mark Peakman who both gave families much cause for optimism. Many thanks to the JDRF UK for bringing these two excellent researchers and allowing parents the opportunity to hear the latest science. Rick Philbin continued the afternoon sessions with "Exercise and Busy Kids." This, again, is a hot topic for CWD families – balancing exercise and type 1 diabetes management is a constant challenge. Rick is an athlete with type 1 diabetes – he is also a certified athletic trainer and spends a lot of time helping families figure out what works best for their child during exercise, whether it is elite sports participation or simply playing outdoors after school.

Mike Schurig, CWD's registered dietitian and conferences manager, led a discussion about Carb Counting in the Real World. Healthy portion sizes compared to real-life portion sizes are often two very different things. Similarly, the food one prepares at home is often quite different carb-wise than the food experienced at restaurants, school, or fast food courts. This presentation generated a lot of discussion!

The final breakout was a Grandparents Discussion Group led by Betty Brackenridge. Betty has built the Grandparents program at FFL Orlando over the last 7 years. It started out with just a few ‘Grands' and now includes hundreds at each program. Similarly, at this year's UK Friends for Life conference, Betty's discussion involved just a few Grands who are ready to share, encourage, and help move the program forward!

The final session of the conference was Douglas Cairns "The Sky Is Not The Limit." Douglas has an incredible and inspiration personal tale to tell – and future dreams to share. He met with all the children throughout the weekend, and helped bring closure to the weekend by sharing his own story of experience and triumph.

The sessions for all of the children – from the tiny ones through the teens – were interesting, fun, and interactive. The teens even had the opportunity to go offsite into Windsor for the afternoon on Sunday! Most sincere thanks are extended to the Youth Program leaders and Staff. These include – for the elementary program – Lauren Lanning, Michelle Rago, Adam Town, Sam Billetdeaux, Giulio Pojer, Sebastiano Torini, and Jen Carlsen. For the tween program, the leaders included Melissa Ringley and Kim Kelly, with staff helpers Martyn Carr, Kathryn Hitchcock, and Polly Haycocks. Teen leaders included Natalie Bellini and Jim Vail, with helpers Marissa Hitchcock and Bob Bulgarelli. Childcare staff included Intissar Ben Halim, Audrey Greenfield, Shayne Weldon, and coordinator Mary Babin. Many thanks to all of you for your incredible energy and positive attitudes. The kids and parents loved you.

Sincere thanks are extended as well to Rick Philbin, who coordinated the Sports Central area on the grounds of the Beaumont House. This included an area for football, rounders, and cricket, as well as open space areas for the little ones to play and have fun. Rick's full time volunteers included Ken Rodenheiser, Laura Bailey, Peter Clark, and Ashley Head. You all were magnificent and the kids so appreciated the opportunity to get out and have active play time!

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/LifeScan UK, Medtronic Diabetes UK, and JDRF UK. Their generosity in supporting this first 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.

 

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CWD FFL UK 2009 -- like all Friends for Life events -- is about families
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Kids of all ages got their faces painted
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The FFL UK Tween Group
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The FFL UK Teen Group
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JDRF UK volunteers helped throughout the event and showed us all how to do the Penguin Dance
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Phoebe and Megan had a great time at the Teen Dance
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As the conference wound down, kids signed each other's shirts -- and arms!
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Last Updated: Monday February 24, 2014 15:12:36
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