On July 10, 2014, NIAMS Director Stephen I. Katz, M.D., Ph.D., participated in a Congressional briefing on Marfan syndrome. The event, titled “Recent Advancements and Emerging Opportunities in Marfan Syndrome and Related Disorders Research,” was sponsored by the Marfan Foundation and moderated by President and CEO Carolyn Levering.
Representative Steve Israel (D-N.Y.) attended and spoke about his commitment to biomedical research, and also received an award from the Marfan Foundation. Dr. Katz’s presentation focused on recent research progress in understanding and treating Marfan syndrome and other heritable connective tissue disorders. Gary Gibbons, M.D., Director of the National Heart, Lung and Blood Institute, discussed various clinical trials and registries related to Marfan syndrome and how these resources are being leveraged to make a difference for patients. In addition, Debbie Berkowitz, an advocate, told her family’s story of living with Marfan syndrome.
The program drew a large audience of over 40 Congressional staff, as well as representatives from several stakeholder organizations.