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)
Savvy Consumer

Are You a Savvy Consumer?

HNC Annual Meeting

Saturday May 19, 2012

Sheraton Imperial Hotel & Conference Center
4700 Emperor Boulevard
Durham, NC

Annual Meeting takes on timely issue

Volunteer Dinner Honors Good Work, Raises Global Awareness
Brenda Neilsen Honored

With the fate of the Affordable Care Act teetering in the Supreme Court as of this writing, the theme of HNC's 39th Annual Meeting, "Are You a Savvy Consumer," was a welcome subject to a large contingent of the North Carolina bleeding disorders community. Two-hundred four adults, children, and representatives of our industry sponsors attended the Saturday, May 19 event at Durham's Sheraton Imperial Hotel and Convention Center. Event organizer and former HNC President Richard Atwood was our Master of Ceremonies, and with his tall, striking appearance and his duck call, he was able to keep the proceedings moving so that our educational presentations did not fall behind a very packed schedule. Early planning was conceived by Sue Cowell before her departure after five years as our Executive Director. Event details were hammered out by Charlene Cowell, Maria Schnaith-Ivan, and Tiffany Holland with help from numerous volunteers. They are all to be congratulated for a superb event.

Laurie and ReidThe morning began at 8AM with breakfast and an orientation for first-time attendees, ably facilitated by our very own Sue Fletcher, PhD, and board member Sally Wright, MSW, LCSW. Next was our Keynote Program – an informative, hands-on symposium presented by Pulse on the Road – a traveling version of the Insurance Pulse feature of LA Kelley Communication's PEN Magazine. Among those on the dais were Laurie Kelley and Michelle Rice, insurance expert from NHF. Even the most seasoned consumers in the room learned from the excellent presentation which featured total immersion into the arcana of Preferred Provider Networks and Health Management Organizations, their differences and the difficulties of planning ahead to reap the most benefit annually from one's insurance carrier's offerings. High risk pools, COBRAs, donut holes, Medicare, Medicaid, annual and lifetime caps did not go unmentioned.

HNC's annual business meeting was next. President Steve Peretti wielded the gavel, as the membership took care of required business, then elected a 2012-2014 Board of Directors. Steve then introduced our new Executive Director, Tom Bennett, who officially took office on June 4. Last order of business was to thank Sue Cowell for her five extraordinary years building our chapter into a national presence.

Afternoon breakout sessions continued our theme. Dan Fox, Advocate with Disability Rights North Carolina presented Understanding Your Rights. Don Molter, Career Counselor, Indiana Hemophilia & Thrombosis Center presented Special Needs Education (504 Plans) & Individualized Education Programs (IEPs). Helen Shapiro, RN, Chapel Hill Hemophilia Center Nurse, and Sue Fletcher, principal investigator for HNC's Aging Study, presented Self-Empowerment: How to Get the Most out of your Medical Visits. Leonard Poe, HNC's Vice President for Advocacy, presented Advocating for your Needs. Robin Kellerman, RN, BSN, MSS and a Nurse Consultant presented Research, Clinical Trials, & Studies, and Michelle Rice presented Standard of Care for Service.

The day's schedule was paralleled by a Children's Track and a Teen Track, in which our kids had their own workshops, outings, and fun with food, facilitated by Tiffany Holland and Charlene Cowell with help from volunteers. Durham Bulls tickets and dinner vouchers were distributed following the door prize drawing and closing of the meeting.

Volunteer Dinner Honors Good Work, Raises Global Awareness

Volunteer Dinner PresentersOn the Friday evening before HNC's Annual Meeting, 83 people gathered in Durham for a delicious meal and a moving presentation by hemophilia luminary Laurie Kelley. Laurie compared US access to hemophilia care with access abroad. Her message, filled with hope and optimism, nevertheless highlights vast inconsistencies in hemophilia care across the globe.

The annual invitation-only event celebrates the remarkable people who have volunteered for HNC in the past year. Four teens from our community presented a sidebar to Laurie's program, with graphics and bleeding disorder statistics from Japan (Shawn Mastrapa), Mexico (Emma Ingram), Thailand (Jesse Cornaire), and France (Kai Stinson). (L-R in accompanying photo)

Brenda Nielsen Honored

Brenda NielsenBrenda Nielsen, Hemophilia Nurse at the Treatment Center in Chapel Hill and Adjunct Assistant Professor in the School of Nursing was honored in the presence of 83 volunteers at HNC's 2012 Volunteer Dinner. Board member and colleague Sally Wright presented the award to Brenda, which reads: "For Two Decades of Caring and Commitment to the Hemophilia and Bleeding Disorders Community." Sally echoed the sentiment of generations of colleagues and patients when describing Brenda as the backbone and the heart and soul of the Hemophilia Treatment Center. "Her calm, always ready, down-to-earth, get-it-done style," along with her computer-like powers of recall about the specific needs of each of her many patients, make her a gift to all of us.

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