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)
2013 HNC Annual Meeting - 40 Years of Friendship and Opportunity

HNC Annual Meeting

Saturday May 4, 2013, 8:30am-5:00pm

Greensboro Marriott Downtown
304 N Greene Street
Greensboro, NC

* 40th Anniversary *

Beginning in 1973 as a loosely organized group of volunteers, the community of Hemophilia of North Carolina celebrated its 40th year at the HNC Annual Meeting on Saturday, May 4, 2013. The all-day meeting was held at the beautiful Greensboro Marriott Downtown. Over 120 people attended the event, which included several expert talks and a separate program track for children. As in the past, the HNC Annual Meeting was a great opportunity to meet some experts, share experiences with other families, and learn about the latest products available.

Early Saturday morning, our vendor exhibit hall was opened and a continental breakfast was served. The Annual Meeting was hosted free of charge to the HNC membership through the generous support of our sponsors and contributions from our community.

George McCoy

The evening before HNC's Annual Meeting was the occasion of a special invitation-only dinner. This was a chance for HNC to honor the many volunteers who have given so generously of their time and effort this past year.

Addressing the group was George McCoy, former HNC president and volunteer since HNC's early days. George gave a moving account of his own personal history, and and many experiences both good and not so good. He talked about the impact of volunteers and volunteerism in his own life, in the hemophilia community, and America in general. He believes that without volunteers there would be no progress in addressing the problems facing hemophilia in particular and humanity in general. Indeed, George himself is a volunteer with few peers. We were honored to have his as our guest and speaker this evening.

Our keynote speaker was Alice D. Ma, M.D., Clinical Associate Professor of Medicine in the Division of Hematology-Oncology at the University of North Carolina School of Medicine. Dr. Ma presented “New Developments in Hemophilia Care”, providing attendees with critical updates related to their care.

After the morning break, Daysi Fardales, MSN from Pfizer Hemophilia, spoke about “Living a Healthier Lifestyle Through Fitness and Nutrition”. While Daysi was speaking in the main meeting room, Kristy Lee, MS and Certified Genetic Counselor from the UNC School of Medicine, led a breakout session to educate attendees about genotyping and ongoing initiatives.

Attendees also had the option to join our HOPE breakout session during this time. HOPE is one of HNC’s newest programs; the name stands for Help, Opportunity, Partnership, and Empowerment. The focus of HOPE is to improve the quality of life for families with children aged twelve and under with bleeding disorders. Gillian Schultz, HOPE’s volunteer Program Coordinator, facilitated this session.

The HNC Business Meeting took place in the early afternoon. Board Vice President Leonard Poe and Executive Director Tom Bennett gave the annual reports on the organization's finances and accomplishments over the past year. The last item of business was the election of the 2013-2014 Board of Directors. Six candidates were chosen as first-time board members, and three of the existing board were reelected. These nine will begin two-year terms beginning July 1; they will join four current board members who will return to complete the second year of their term. A special thank you was given to retiring board members Scott Andrews, Warren Ingram, Kathy Register, Maria Schnaith-Ivan, and Ann Skinner. Contact information and bios for all board members will be available shortly on the HNC website.

A Hemophilia Treatment Center (HTC) panel consisting of Steve Humes (Regional Coordinator for the Region IV-North Hemophilia Treatment Center Network), Sally Wright (UNC Chapel Hill), Anita Smith (Wake Forest Baptist), and Charmaine Bond (East Carolina University) spoke about the benefits of seeking treatment at an HTC. The panel helped attendees to understand the process of visiting an HTC, what is offered, and how to make the most of their time there.

As the panel of HTC staff captivated the main audience, we offered breakout sessions for our SOAR and Blood Brotherhood Programs. Matthew Igelman, our Blood Brotherhood Program Coordinator, and Jennifer Newman, Physical Therapist at UNC Chapel Hill, bonded with the Blood Brothers as they discussed issues related to men and bleeding disorders. The SOAR women, in the breakout room next door, could barely contain their laughter as they introduced themselves through an icebreaker. Led by Crystal Hoernlein, the SOAR woman discussed the importance of a women’s group and brainstormed about future plans.

Our final presenter was Johanna Gray, National Hemophilia Foundation’s (NHF) Washington Representative, who spoke about one of the most popular topics, the Affordable Care Act. For a subject that can be so daunting and confusing to some, Johanna did a marvelous job explaining the recent and upcoming changes to our healthcare through the ACA.

Turtle RaceOur youngest attendees, ages 4-12, had the opportunity to get a first-hand look at reptiles while learning about these fascinating creatures' habits and habitats. Live turtle races were definitely the highlight of the children’s day! Afterwards, Abrakadoodle came in to assist with a variety of arts and craft projects to ensure that no child left without something to commemorate their time at our 40th Annual Meeting.

Thanks to BioRx, LLC., teens were involved in the Clot Shots program for the entirety of the meeting. Here they were introduced to the use of modern technology as a form of personal expression to patients living with a bleeding disorder. Working in pairs, teens learned different aspects of production, including writing, filming, lighting, editing, and directing. At the end of the meeting, teens showed off their masterpieces to the rest of our attendees.

We closed out the meeting with our Vendor Visit Raffle, where almost everyone who stayed won a prize! After the meeting, attendees were welcome to enjoy a picnic at Barber Park, where we had the two essentials: food and fun games.

Download the Complete Program/Agenda [pdf/550kb].

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