A select group of hemophilia community leaders visited the National Hemophilia Foundation (NHF) national offices in New York City in May 2010. These nine men who have hemophilia make up a new group called AFFIRM, or Adult Fellowship for Integrating Responsible Mentors.
AFFIRM is a three-year fellowship targeting men ages 25 to 35 from across the country. In many ways, AFFIRM is a natural extension of NHF’s National Youth Leadership Institute (NYLI) for young adults ages 18 to 25, although the two programs are not affiliated.
[Steps for Living: Support Networks for Independent Young Adults]
Twice a year, the men in AFFIRM are introduced to key stakeholders in the hemophilia community to better understand each organization’s role. In addition, the team spends a few days at each meeting working on leadership development and training exercises. This inaugural AFFIRM group first met in Breckenridge, Colorado, in late 2008. They were challenged during outdoor team-building exercises and discussed hemophilia issues with Marilyn Manco-Johnson, MD, director of the Mountain States Regional Hemophilia and Thrombosis Center at the University of Colorado.
Six months later, the group toured the Centers for Disease Control and Prevention in Atlanta, learned about programs such as the Universal Data Collection project, and met with the local hemophilia treatment center regional coordinator, Karen Droze. In September 2009, the group toured a Bayer HealthCare manufacturing plant in Berkeley, California, where the men developed an appreciation for the complexities involved in the production of clotting factor.
In May 2010, members spent time with NHF vice presidents and other staff, learning about the structure of the organization and the educational resources NHF provides to the bleeding disorders community. AFFIRM plans to visit other stakeholders and participate in NHF’s Washington Days on Capitol Hill.
The men have gained valuable exposure to multiple facets of the bleeding disorders community. As a result, many members have begun working closely within their local chapters. They also have attended meetings of a larger scope, including the North American Camping Conference of Hemophilia Organizations (NACCHO), the World Federation of Hemophilia World Congress and NHF Annual Meetings. While developing themselves as leaders, both personally and professionally, the men also have formed lifelong relationships and friendships.
AFFIRM participants are:
- Oscar Fonseca
- Brian Heinrich
- Allan Kucab
- Joshua Lunior
- Ben Markl
- Lew Parker
- Rich Pezzillo
- Spencer Straub
- Bobby Tran, MD
AFFIRM sponsors are Ed Kuebler, LCSW; Jim Munn, RN, MS; Madeline Cantini, RN; and Sharon Funk, PT.
AFFIRM is funded through an unrestricted educational grant by Bayer HealthCare.