NIAMS, NHLBI Directors in Briefing with Marfan Advocates|
NIAMS director Dr. Stephen Katz and NHLBI director Dr. Gary Gibbons recently 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, sponsored by the Marfan Foundation, highlighted research opportunities in Marfan and related disorders and advances that will lead to improved patient care.
Reps. 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 NIH.
Katz and Gibbons discussed recent research advances and highlighted the importance of engagement with the community to enhance and facilitate future research. In addition, Austin and 14-year-old Owen Gray, who both were diagnosed in 2014, spoke about how Marfan has affected their lives. Michael Weamer, president and CEO of the Marfan Foundation, also spoke about his involvement with the foundation. Gavin Lindberg, a former member of the Marfan Foundation board of directors, moderated the session.