On January 13, 2016, NIAMS director Dr. Stephen I. Katz and NHLBI director Dr. Gary H. Gibbons joined former Baylor basketball standout Isaiah Austin and others at a Congressional briefing about Marfan syndrome. Marfan syndrome is a heritable connective tissue disorder. Connective tissues hold the body together and provide a framework for growth. In Marfan, the connective tissue is defective, leading to changes in many body systems, including the skeleton, eyes, heart and blood vessels, nervous system, skin, and lungs. The briefing, which was sponsored by the Marfan Foundation, highlighted research opportunities in Marfan and related disorders, and advances that will lead to improved patient care.
Representatives Bill Flores (R-FL), Steve Israel (D-NY), and Chris Van Hollen (D-MD) all provided brief remarks to the audience of patients, advocates and Congressional staff. They expressed support for continued investment in biomedical research and the critical role of the NIH. Drs. Katz and Gibbons discussed recent research advances and highlighted the importance of engagement with the community to enhance and facilitate future research. In addition, Isaiah Austin and 14-year-old Owen Gray, who both were diagnosed in 2014, spoke about how Marfan has impacted their lives. Michael Weamer, President and CEO of the Marfan Foundation, also spoke about his involvement with the Foundation, and Gavin Lindberg, a former member of the Marfan Foundation Board of Directors, moderated the session.