The National Hemophilia Foundation’s (NHF) Red Tie Soiree raised nearly $300,000 to support families with bleeding disorders. The event, held May 18, 2017 at Current at Chelsea Piers in New York City, is NHF’s premier gala and honors those who have made significant contributions to the bleeding disorders community.
NHF presented Inspiration Awards to James Jorgenson, MS, RPh, FASHP, CEO and board chair of Visante, Inc., and Visante Limited, and Edmund Pezalla, MD, MPH. Jorgenson and Pezalla have provided valuable leadership on the Comprehensive Care Sustainability Collaborative, an ongoing quality-improvement and cost-management initiative driven by the insights of hemophilia treatment center (HTC) directors, clinicians and administrators working in conjunction with payer/managed care medical and pharmacy directors from national and regional health plans. The collaborative works to develop a framework for pilot programs between payers and HTCs to be replicated across the US to facilitate cost-effective hemophilia management, using the HTC integrated care model.
Joe Pugliese, president of Hemophilia Alliance, was honored with the Community Advocate Award. Pugliese has served as leader of the Hemophilia Alliance, an organization of HTCs that participate in the 340B Drug Discount Program. In addition to his work with the alliance, Pugliese serves on the boards of the Thrombosis and Hemostasis Societies of North America, World Federation of Hemophilia USA and the American Thrombosis and Hemostasis Network (ATHN) advisory committee.
The Leadership in Research Award was given to Amy Shapiro, MD, CEO and medical director of the Indiana Hemophilia & Thrombosis Center. Shapiro has been active in improving treatment for people with bleeding disorders throughout her career, authoring more than 250 journal articles, abstracts and textbook articles. She has served on NHF’s Medical and Scientific Advisory Council and as co-chair of the board of directors for ATHN.
A highlight of the evening was an impassioned speech by Daniela Delgado. Daniela, a 9-year-old with von Willebrand disease, has been an advocate for children with chronic illnesses. She asked attendees to pledge to support NHF’s Connections for Learning program, which provides assistance for families to attend NHF’s Annual Meeting. Daniela’s speech inspired attendees to donate more than $40,000 to support the program.
NHF wishes to thank its Visionary Sponsors, Indiana Hemophilia & Thrombosis Center, Inc., the Hemophilia Alliance and Shire, for their support of the Red Tie Soiree.