NHF’s 59th Annual Meeting wrapped up today after a full three days of workshops, lectures, children’s activities and wonderful social events. It’s estimated over 2,000 people attended, but certainly this was a record attendance judging from the crowds. This was a great time amidst the changing times we now face with tighter insurance reimbursement, which is affecting everyone.
Held in the family-friendly city of Orlando, Florida, the event attracted families from across the country. Because the US is the world leader in factor concentrate manufacturing, and also is a world leader in hemophilia research, the event drew in visitors from Mexico, Guam, Puerto Rico and even China. Held at the stunning Orlando World Center Marriott, the venue offered plenty of space for all the meetings and is close to the theme parks Sea World and Universal Studios.
This was my 16th annual meeting, and I think I saw more of my long time friends and colleagues than ever before. We all laughed at how we have changed over the years, and marveled at our children, now in their teens and 20s. We remember those we have lost, and are deeply grateful for those still with us.
My main task was to be present for a book signing of “Raising a Child With Hemophilia,” edition 4, completely revised and redesigned, and supported with a grant by CSL Behring. We gave away many copies and heard many stories of how this book, first launched in 1991, helped so many families through the early years of child rearing. Indeed, some of the moms who first submitted stories for the book, back in 1989, were actually there! This included for me a surprise visit by Lou Ann Helman and her son Stephen, whom I have not seen in over 10 years, and who gave me many insights into hemophilia when I was first writing the book.
I also saw Jocelyn Bessette Gorlin, now of Children’s Hospital of Minneapolis, but who was originally at Boston Children’s Hospital, and was the nurse who first called me on a Friday afternoon to say “Your son has hemophilia…” Jocelyn was the first person to introduce me to and walk me through hemophilia, and she encouraged me to write my book, and also served as medical editor. To see her again… well, there just are not words! She gave us education, support and friendship during our rough and tough times.
I attended a great symposium, sponsored by Baxter, on Transitions, and heard wonderful advice from Susan Zappa, RN, of Cook Children’s Medical Center in Fort Worth, Texas, and Danna Merritt, MSW, of Children’s Hospital of Michigan, Detroit. Transitions is a key focus area for everyone in hemophilia now, as we usher in a new generation of young adults who mercifully escaped the HIV era in the mid-eighties and who are now young adults and striking out on their own. The panel gave advice on how to equip this generation with skills and tools to live on their own successfully with a bleeding disorder.
In between sessions, families could stroll among the many booths, where pharmaceutical and home care companies provided representatives, to answer questions about products and services, and educational items about bleeding disorders.
After a day full of networking, sessions, meetings and lectures, families relaxed with evenings at Sea World, compliments of CSL Behring, and last night, Universal Studios, compliments of Baxter. After the rides was DJ-driven dancing where everyone–industry, patients and medical providers–could party.
Thanks to NHF for their incredible hard work and dedication. These events are mammoth and none of us can truly appreciate the effort that goes into it, especially when the event proceeds without a hitch. NHF is to be commended for this fabulous event. Thanks also to all the many corporate sponsors, including home care and pharmaceutical companies, and the various nonprofits, who all provide financial support. The Florida chapters excelled as our hosts. Next year’s meeting is in Denver, Colorado and we all hope to see you there!
(Photos: with Stephanie Dansker; Booths; with Debbi Adamkin and Debbie de la Riva; with Delin Kong, president of Hemophilia Home of China; with Johnny Marquez, new president of the Puerto Rico chapter; with Jocelyn Bessette, RN; Diane Horbacz with Derek Nelson)