Client Spotlight: Mr. Chip Goes to Dallas
Horizons in Hemophilia, September 2015
By Chip H.
Every year the National Hemophilia Foundation (NHF) hosts an Annual Meeting at which time our diverse and dynamic bleeding disorders community gathers together to share information, experiences, ideas and fellowship. For this year's event we met August 13-15 just north of Dallas, Texas at the Gaylord Grapevine hotel. The theme was "Boots on the Ground." In this photo I am standing with NHF President Val Bias (on right).
I've attended a number of these conferences over the years and always find myself drawn to the meeting for the same primary reasons. I attend National to "keep an ear to the ground" and learn about new treatments and the latest breakthrough research concerning bleeding disorders. I attend to see our community collectively define what's important to us and to marvel at what we accomplish when we focus and work together. I attend to catch up and laugh with old friends and, at the same time, forge new relationships and learn from families in our community. And I also attend to take pride in the many ways in which people from my home state and the professionals at HoG and Georgia's Hemophilia Treatment Centers make a positive difference in the bleeding disorders community.
The twelve HoG members present included nurses, social workers, program staff and CEO Maria Manahan. Regional Coordinator Karen Droze led a poster presentation for the Southeast Region. Deniece Chevannes, Director of Health Promotion and Evaluation, worked with teens for an entire day using games to foster youth leadership. Gail Day, Director of Social Work, moderated a session on carriers and Penny Kumpf, VWD Community Outreach Nurse, a member of the National Nurses Working Group, was busy planning for next year’s meeting.
NHF's planning committee meets throughout the year in preparation for the event and their work is most evident in the wide variety of educational sessions offered during the conference. More than 90 sessions were packed into the three-day schedule and their titles reflect the many different topics of interest and the multitude of people that make up the bleeding disorders community:
- Victory for Women: I'm Unique & Important
- The Power of One: Clinical Trials
- Hola y Bienvenido! Spanish Meet & Greet
- Hepatitis C Updates
- Protecting Your Child's Financial Future
- Everyone Counts: Camp and VWD
There's something for everyone on the schedule and these educational sessions are tailored specifically for the many individuals that make up our community. There are sessions for women, Latinos, siblings unaffected by a bleeding disorder, social workers, doctors, nurses, chapter staff, industry partners, old guys with hemophilia, young guys with hemophilia, etc. So many interesting sessions are on the docket that it can be a real challenge deciding how to spend any given hour of your day. Many times there were two or three meetings held simultaneously that I would have liked to participate in, but I can only be in one place at a time! Fortunately, all sessions are recorded and available on CD.
Some of the sessions I personally enjoyed attending this year included The Power of One: Clinical Trials, New Wheels: Ankle Joint Replacement and Fusion, New Treatments and Gene Therapy, My Life, Our Future: Better Data, Better Science, Better Outcomes and the Update on Gene Therapy for Hemophilia. "Rap Sessions" throughout the conference also provided me a great opportunity to talk about personal challenges and victories with the "blood brothers."
Of course no trip to NHF National would be complete without walking through the exhibition hall for an hour or two. Exhibitors and vendors fill this huge space with towering video displays, games, snacks, educational materials and marketing wares – all related to some aspect of the bleeding disorders community. For me this year, the exhibition hall was a good place to stop in and say hello to some of the people I know who work in the hemophilia industry. Of course it's also where I find pens, tourniquets, drawstring bags, lanyards, bandanas, small flashlights, etc... all of the finest “hemophilia swag” conveniently located in one place!
If the educational sessions nurture the mind, it's the opportunities to socialize within the community that truly feed the soul. I've always felt a certain kinship with those dealing with a bleeding disorder. To me, y'all are family - a tightknit, diverse group of folks dealing with similar challenges. Because my challenge is severe hemophilia, everyone dealing with that diagnosis is a "blood brother" or "blood sister." I'm fond of saying that hemophilia is like living in a small town, it's just that we're spread out all over the country and the world. That makes NHF's National Meeting something of a family reunion. I've got friends with hemophilia who are spread out all over the 50 states.
This yearly meeting is my annual opportunity to catch up and hang out. Fortunately, there were many opportunities in Dallas to do just that. There were quite a few sit-and-talk assemblies, meals, exercise sessions and after-hours gatherings allowing me and my buddies to share what's been happening in our lives over the past 365 days. Bleeding disorders are very relationship-based. The chance to share experiences, both good and bad, with people who share the same challenges as me means everything. These opportunities to both speak and listen, to both share and learn and to equally laugh and grimace are very important to me. It's a powerful experience and a great reminder that, even though our bleeding disorders are rare, we are certainly not alone!
Another high point of each NHF Annual Meeting I've attended is the opportunity to see just how much of a contribution Georgia makes to the global bleeding disorders community. Our state, our researchers, our medical professionals and each of us as individuals who support the pharmacy programs at HoG do amazing things not only at the local level, but also on a national and even an international scale. On Saturday afternoon, August 15, the World Federation of Hemophilia (WFH) talked about the worldwide state of hemophilia and how to get involved in the global effort to ensure "treatment for all." Did you know that HoG is the central pharmacy for coordinating factor donations to the developing world? I did... and it makes me extremely proud to help support this work. When the country of Nepal experienced a large-magnitude earthquake earlier this year and their bleeding disorders community was suffering, it was HoG staff who worked late into the evening receiving factor donations, carefully packing them and coordinating the shipment of medications that saved both life and limb.
Did you know that when Trish Dominic retired this spring after 30+ years at the helm of Georgia's hemophilia community, NHF President Val Bias personally attended her retirement celebration and spoke from the heart about what a tremendous difference her leadership made to the national and global hemophilia community? I did... HoG's new CEO Maria Manahan continues that work and simultaneously sets her own ambitious agenda. Her vision and enthusiasm powerfully impact many forward-thinking programs in our community including the Hemophilia Alliance and the American Thrombosis and Hemostasis Network (ATHN.) I know these things because I attend NHF's Annual Meeting and I see the many ways that Georgians make a lasting difference in the bleeding disorders community. I was in the front row when Emory's Trent Spencer gave an update on his gene therapy research. His important work takes place because of a generous grant from Hemophilia of Georgia.
Texas has a reputation for doing things "bigger and better," and this year's NHF Annual Meeting, its 67th, hosted approximately 3,000 people in what has become the largest gathering of the bleeding disorders community in the United States. Individuals and families coping with bleeding disorders, healthcare providers, chapter staff and volunteers, industry partners and pharmacists all rubbed shoulders over a 72-hour period jam-packed with educational sessions, social activities, recognition ceremonies and even exercise classes. All provided opportunities to learn more, share more, think more and do more.
Next year, in 2016, the U.S. plans to host more people than ever with bleeding disorders. Orlando, Florida will accommodate NHF's 68th Annual Meeting from July 21-23, followed by the World Federation of Hemophilia's World Congress from July 24-28. Chances are that we will witness more people with a bleeding disorder gathered in one place at one time to make themselves heard than ever before. Individuals from every part of the globe will be counted and will share their stories, their successes and their challenges. They will all help bring about positive changes that make a difference in all our lives. It's going to be a powerful experience that I'm certain will yield great results for the bleeding disorders community. I know I'll be making the trip and I hope to see lots of folks I know from Georgia in attendance. I also hope to meet lots of new friends. If you've never attended an NHF Annual Meeting, next year's promises to be quite a memorable event! Contact HoG or check the NHF website next year for registration information. Scholarships that cover your room, most meals and travel expenses are available for first-time attendees.
Editor's Note: Here is a photo of Chip in 1972 as the poster kid for the Dallas Chapter of the National Hemophilia Foundation when his family lived in Texas.