Hemophilia of North Carolina

Since 1977, serving the people of North Carolina
affected by bleeding disorders.

260 Town Hall Dr., Suite A, Morrisville, NC 27560
1-800-990-5557 (toll free)
Trinity Center - Bird

HNC Family Retreat

Saturday-Monday, September 1-3, 2012
Trinity Center
Pine Knoll Shores, NC Outer Banks

Family Retreat yields plenty of “Fun in the Sun”

Over the Labor Day weekend more than 100 adults and children descended on the Trinity Center at Pine Knoll Shores intent on having “Fun In the Sun” at Hemophilia of North Carolina’s 2012 Family Retreat. By all accounts, they succeeded.

HNC Executive Director Tom Bennett greeted them by saying, “We want you to go home with sand in your shoes, useful information in your head, and warm memories in your heart.”

The warm memories portion started Saturday night with a Kick-Off Carnival featuring face painting, balloon toys, cotton candy, popcorn, snow cones and a fun assortment of games that included ring tossing, a “duck pond” and – best of all – a cupcake eating contest for all ages. The contestants stretched their stomachs and provoked gales of laughter as they raced the clock to stuff down the most sugary treats.

Trinity Center - Beach HouseNext day a raffle ticket and a bit of luck sent some families home with beach toys and portable BBQ grills. One fortunate soul landed an MP3 player. That evening a talent contest attracted an impressive roster of singers and musicians – plus one comedian and a young man with an amazing facility for gospel rap.

Trinity Center - SunsetThe useful information portion included an array of speakers who displayed both expertise and empathy with their listeners.

  • Lisa Greene, BS, CCP, spoke on “Communicating Effectively With Your Children” and used her own experience as the parent of two children with cystic fibrosis as one basis for her advice on the special challenges that face the parents of children with a chronic illness. She focused closely on proactive techniques that parents can use to deal with disciplinary problems. CSL Behring sponsored Ms. Greene’s presentation.
  • Daysi Fardales, MSN, ARNP-C, a nurse-educator specialist, discussed steps for “Encouraging Early Independence” in children and adolescents. Perhaps the most inspiring story was that of a young teen who – though he’d never self-infused – found the courage to do so when his mother wasn’t available and the aunt who was minding him did not know how to help him cope with a bleed. Ms. Fardales was sponsored by Pfizer.
  • Tiffany Holland, an HNC Board member and the mother of a four-year-old boy with hemophilia and von Willebrand Disease, facilitated a “real world” sharing session called “Let’s Chat.” Ms. Holland’s spoke of how she felt and what she did when she first learned that her son has not one, but two chronic illnesses.
  • Micheal Trombley, MD, showed great candor in saying that many MDs know relatively little about bleeding disorders, and he offered tips and techniques for educating a physician without provoking a confrontation. He enlivened his talk with some of the magic tricks he uses to help put children at ease when they come in for a consultation.
  • On Monday Lois Geer, MBA, BSN, RN, presented “Living Well With Inhibitors: A Guide for a Healthy Life.” Working a packed room, she facilitated a lively question and answer session with participants and distributed a handy resource guide on inhibitors. Her presentation was sponsored by Novo Nordisk.
  • One thin partition away, Gina Raymond-Duncan, Manager for Coagulation Products for CSL Behring, led an equally energetic and informative program on von Willebrand Disease. Her description of how clotting and clotting factors work was a masterpiece of straightforward teaching that offered something for everyone from von Willenbrand novices to old hands.

Trinity Center - DormThe “sand in your shoes” portion included a beach picnic for everyone, free time on the shore, and a treasure hunt for the children. Speaking of children, the Kids Track also featured crafts and a visit from a small, docile – but live – alligator that arrived in the custody of interpreters from the nearby North Carolina Aquarium. A Teddy Bear Hospital, facilitated by Judy Igelman and Tat’yana Shchetinina, put a cuddly stuffed friend in every child’s arms.

All of the HNC staff and a dedicated cadre of volunteers worked in some capacity on the Family Retreat. For example, Tiffany Holland and Nicole Bailey cooked and frosted several hundred cupcakes. Special mention should be made of the planning, organizing and other “heavy lifting” done by Charlene Cowell, HNC’s new Operations & Member Services Manager.

None of this would have been possible without the generous support of our event sponsors. Thank you!

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