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)

HNC 2010 Annual Meeting

Saturday May 22, 2010

Sheraton Charlotte Airport Hotel
3315 Scott Futrell Drive
Charlotte, NC


Planning for the Best...
Prepared for the Worst.

HNC hosted our 2010 Annual Meeting on Saturday, May 22nd where over 170 people learned how to expect the best but prepare for the worst. Registration opened at 9:00am with a distribution of an emergency Go-Bag for each family that was filled with information provided by NHF on how to prepare their kits. Our vendor exhibit hall was also opened for the day and we graciously thank our sponsors for their participation and support of this event.

The day began with a presentation by Kelly Fitzgerald, Associate Director of Government Relations, Patient Services Inc., who shared information on insurance and preparing for changes that often take place in our lives regarding coverage. She gave an in depth look at all facets of gaining and retaining insurance coverage for yourself and your family. The next panel was made up of Jennifer Crawford, Director of Education for NHF, Tami-Wood Lively, JD, MHA of ATHN and Pam Brynarsky from the American Red Cross. This panel provided extensive information on emergency preparedness, programs and resources that are available and how to make sure you stay connected in the event of an emergency.

We had an opportunity to breakout into sessions for women, men, parents and a Walk team captain strategy meeting. Three women from the HNC Women's Advocacy Group, Maria Schnaith-Ivan, Sue Fletcher and Sharon Ingram, had chance to share their experiences and their mission as part of the group with the women who attended. This was followed by a discussion group led by Kristin Prior who presents to groups nationally as part of the speakers circuit from CSL Behring. The men were able to listen to a valuable presentation on aging by Raj Kasthuri, MD of UNC Chapel Hill. This is a very timely topic that has received a lot of attention nationally and will become a focus of HNC in the future. Parents and children ages 8-17 joined together for a self-infusion session facilitated by Anita Smith, RN of Wake Forest University Baptist Medical Center. Everyone had a chance to use the Bay Cuff self-infusion training system provided by Bayer Healthcare to learn more about the process. Walk team captains gathered with Sue Cowell to share some very creative ideas for activities, fundraising, recruitment and awareness of the 2010 Hemophilia Walk scheduled for October 16th this year. Our 2010 Walk Chairs, Tiffany & Brandon Hargett, have already secured a donation of a helicopter ride from two that will be raffled off to raise funds for their team – Zackary and the Factor 8's – how creative!

After lunch HNC President Richard Atwood, Treasurer Kathy Register and Executive Director, Sue Cowell presented the business meeting. A review of what HNC has accomplished over the past year and a look to the future was presented along with the election of the 2010-2011 Board of Directors. All current board members will be returning and two additional nominees were elected to serve. Stephen (Steve) Farrar of Charlotte, NC will join the board for a two-year term and has been past president and longtime member of HNC. Shawna Garrett of Charlotte, NC, an attorney and advocate for the bleeding disorders community is also joining HNC on the board for a two-year term. HNC VP of Advocacy, Leonard Poe, then discussed what is happening with issues impacting our community and suggested that everyone join us for the 2010 Legislative Day in Raleigh on June 8th. Decisions are being made daily on the changes in health care and it is important that we bring awareness to our needs. Leonard also discussed his upcoming trip to the Dominican Republic to assist with summer camp for children affected by a bleeding disorder. He has been working closely with Laurie Kelley and her organization to help with this camp for 50 children. Throughout the meeting, Leonard collected baseball gloves, bats, balls and a number of other items donated by individuals and industry to help support the effort. Gina Raymond-Duncan of CSL Behring also presented Leonard with a $500 check to help support the summer camp and purchase necessary items for its success.

Keynote speaker Tres Major, President of the Louisiana Hemophilia Foundation, spoke of the devastating affects from Hurricane Katrina with a very vivid slide show of the impact it had in their area and how it affected the bleeding disorders community. He talked about the lessons learned from this tragedy and how the Chapter rallied their troops to help members, learned valuable lessons and helped develop emergency preparedness policies that are helping throughout the United States. It was very inspiring to see the community pull together to help each other through this disaster.

Our afternoon included an update on research and new products in the pipeline from Alice D. Ma, MD of UNC Chapel Hill and continued with a panel on preparing for visits to the emergency room and working with first responders. Anne Lowish, RN of MedPro Rx presented information on how to proactively work with hospitals and personnel in your area in the event an emergency takes place. Tiffany Holland, HNC member, spoke about her experience during an emergency with her son where he was stuck way too many times without success and the complications this caused. Tiffany used this experience to help develop a hemophilia protocol with hospital personnel that is now in use at all Carolina Medical Center emergency rooms in her area. This is a wonderful example of advocating for yourself and our hats off to Tiffany on making a difference not only for herself but the entire bleeding disorders community who will benefit from her effort.

The children also had a full day activities and two groups (ages 3-7 and 8-17) had a number of presentations and programs. Both groups participated in a martial arts demonstration led by Tres Major and his wife, Morgan. Both are certified martial arts instructors and had a great time teaching the kids some new moves (that hopefully they aren't using on their parents or siblings). The American Red Cross presented information to the older group on how to prepare for emergencies while HNC members, Judy Igelman and Charlene Cowell worked with the younger group on identifying items that would be included in emergency kits. The afternoon programs for the younger group included a Dino Time and Keep it Moving session presented by Discovery Place and HNC member, Ann Skinner, hosted a wonderful craft activity of creating flowerpots. The older kids played a game of Bugger Wars (and yes it involved picking buggers out of a nose – green bean bags that is – and trying to stick them on the opposing teams vest) and also the Games2U Video Van that had the latest games available to entertain everyone. Our thanks to all the wonderful volunteers that helped with the children's programs.

Sue Cowell, HNC Executive Director, then closed out the meeting with a presentation about the 2010 Hemophilia Walk including information about the national initiative, sponsorships, team captain instructions, fundraising and an update on the great activities planned this year. We hope everyone comes out to join us for our 3rd annual Hemophilia Walk and a great day of fun for a terrific cause.

After the meeting, tickets were distributed for Carowinds amusement park so members and their families could enjoy a great evening on the rides!

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