Warm smiles, shy smiles, ear-to-ear grins. Old friends, new friends. And, as Joe Solo would say, "Magic and fairy dust from across the pond." Friends for Life UK 2010.
The Beaumont House in Old Windsor again was the home of this year's Friends for Life conference, and the event was held over Halloween weekend. 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 also some newly diagnosed families. Many parents knew each other from the various CWD mailing lists and forums – yet they had never met before Friday! Also this year, there were adults with type 1 attending the conference for their own knowledge and connecting experience (vs doing these things for their children).
The conference began on Friday evening, as registration and the Exhibit and Sponsors areas opened in conjunction with a wonderful dinner. Later that evening, Oliver Double (aka Tom and Joe's dad) opened the conference program with a comedy keynote ... a very humorous look at family life with diabetes. Entertaining such a diverse group of people and making them laugh can be a tricky thing. Oliver is clearly very good at it – the audience, adults and children alike, was in stitches!
Many thanks to Julia Mattingly, Al Piper, Jackie Jacombs, and Jacqui Double for coordinating the registration area on Friday, getting everyone the correct t-shirt sizes and name badges once they arrived on site, and many thanks to Michelle Boyt for serving as the information checkpoint for all who were new to the area!
The Founding Sponsors of the conference included Animas and LifeScan, while Supporting Sponsors included Cellnovo, Roche, Bayer, and Medtronic. The Charity Partner of the event was JDRF UK. Many, many thanks to all of these companies for their support, great ideas, 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 TrialNet, Arctic Medical, INPUT, AquaPac, MyCareConnect, and the Diabetes Scholars Foundation. 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.
The opening keynote by Joe Solowiejczyk – It's Not Just a Numbers Game – was spot on. Joe shared many of his own experiences and insights as a person who has lived with type 1 diabetes for nearly 50 years. He also shared insights from his work as a family therapist who has worked with thousands of families with type 1. Joe has the ability to make the audience laugh and cry, sometimes at the same time.
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 -- Strike the Spike, Improving Control with Accurate Carb Counting, and Sports, Exercise, and Blood Glucose Control. Natalie Bellini – also known for practical sessions and her humorous and engaging presentation style - presented Sensors and Infusion Sets and Sick Day Management. Dr. Fiona Campbell, recognized as one of the leading paediatric endocrinologists in the UK, presented Introduction to Insulin Pumping.
There were a number of discussion groups on Saturday afternoon. Rosalind Oakey and Lesley Jordan from INPUT engaged a group in discussion about pump use in the UK. Mike Schurig met with families who wanted to discuss and share ideas about living with celiac. And the Mums and Dads Discussion groups met. Jacqui Double and Jackie Jacombs led the Mums group – and reported back almost immediately that they could have used at least twice the time and lots more space for smaller discussion breakouts. The Dads group, led by Oliver Double and Ashley Head, reported similarly. We will work on this for next year! There is so much to share and talk about; and we heard loudly and clearly that this discussion time is very important!
Following dinner on Saturday night, nearly everyone dressed up in a Halloween costume ... it was party time! Younger children and families had a party in Hanover Ballroom from 8:30-11:00, and the teens had their own party in Balmoral until midnight. The DJs were both fantastic, and vampires, witches, skeletons, and fairy princesses kept up the dancing nonstop! The CWD staff had a Halloween treat for all of the children ... a trick-or-treat goodie bag from the U.S. with each staff person's favorite candy inside, with carb counts posted on the door to the ballroom. There were even gluten free treats provided!
Sunday morning we all had a very welcome extra hour of sleep – the clocks were turned back! Dr. Campbell opened the day's sessions with the morning keynote, Managing Hypoglycaemia. This session included a scientific and detailed look at what happens during hypoglycaemia and why. Low blood glucose levels, particularly in the middle of the night, are the fear of every person with type 1 and every parent of a child with type 1. Understanding hypoglycaemia is so very important to its management.
Following the keynote, Joe Solowiejczyk presented Where the Wild Things Are, which was a mix of presentation and discussion about how to deal with the scary situations and thoughts that we all have as our children grow up, become teenagers, and move away to be on their own. In the adjacent room, Jenny Cropper and Stephanie Singham presented Supporting Your Young Person with Managing Their Diabetes, which was a look at the support resources available to families in the UK. This session was sponsored by Founding Sponsor Animas.
Afternoon sessions included several breakouts and discussion groups right after lunch. The JDRF-sponsored research presentation, featuring Noel Morgan, Harriet Wilkinson, and Rachel Connor was, according to parent feedback, 'a lot of great information to chew on.' Parents very much appreciated the JDRF having a strong presence at the conference – with Rufus meet-n-greets for the little ones and so much information for parents and other adult participants!
Gary Scheiner, again in his very practical style, presented Making Sense of Sensors. Plenty of parents reported that this session was an Aha Moment in terms of their understanding the value of continuous glucose sensing in diabetes management. Also in this time slot, Jacqui Double and Jackie Jacombs led a discussion about Managing Diabetes in Schools. This is a hot topic every day – made moreso this weekend by the changing legislation and anticipated upcoming challenges. Jacqui and Jackie reported that they will stay in touch with families about these school issues via the CWD UK mailing list.
The final breakout was a Grandparents Discussion Group led by Joe Solowiejczyk. The dozen or so grandparents who engaged in the conversation reported that it was an amazing interaction and they all want to come back ... and they want Joe to pick up the discussion right where it left off!
Jeff Hitchcock presented the closing keynote on Care Suggestions. Except that wasn't really what it was about. Jeff shared his 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) with an incredibly bright and healthy future in front of her. Jeff stressed that there is much to be hopeful about, and that our common goal should be 'the smiles on the beach' instead of perfect numbers.
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 spend the day at Thorpe Park on Sunday! Most sincere thanks are extended to the Youth Program leaders and Staff. These include – for the elementary program – Lauren Lanning, Marissa Hitchcock, Martyn Carr, Aileen Durkan, Liz Gillum, and Laura Bailey. For the tween program, Melissa Ringley, Carolyn Billetdeaux, Adam Town, Paul Cheverton, and Vicky Wilde. Teen staff included Natalie Bellini, Jim Vail, Neal Billetdeaux, Michael Byers, Deborah Glassborow, and Nikki Allen. Childcare staff included Mary Babin, Shayne Weldon, Audrey Finkelstein, Lydia Jenner, Lara Wann, and Niki Galliford. 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 Ashley Head and Alex Beadel, who kept the Sports Central activities up and running indoors and out despite the inclement weather! This included an area for football and cricket, as well as open space areas for the little ones to play and have fun. The children so appreciated the opportunity to have active play time!
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 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 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, Bayer HealthCare Diabetes Care UK, Medtronic Diabetes UK, and Charity Partner JDRF 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.
By 6pm on Friday, families were on site and registration was busy
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Olly Double concluded his "proper welcome" session with a rendition of "Think Like a Pancreas," to the tune of "Walk Like an Egyptian."
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Joe Solowiejczyk (here chatting with Jacqui and Olly Double) was a big hit, as usual
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Elementary kids were in good hands -- here, Marissa helps check a blood sugar
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Teens preparing for their off site on Sunday, which was enjoyable in spite of the rain
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Everyone enjoyed the spectacular face painter, who returned again to help everyone get in the Halloween mood
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Saturday evening's parties featured all manner of Halloween spooks
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