On September 13, the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Coalition held a congressional briefing to commemorate the 25th anniversary of the organization’s honoring of congressional champions who have been instrumental in supporting NIAMS and the NIH. The Coalition is a group of more than 70 medical, patient-advocacy, and science-based organizations (including the ACR) dedicated to advancing the critical research of the NIAMS and the NIH. The Coalition’s mission is to elevate understanding of the value of the NIAMS among policy makers and the public to foster increased support of the Institute.
The September briefing featured Stephen Katz, MD, PhD, director of NIAMS; NIAMS-funded scientists; and patients who have benefited from NIAMS-related research. During the briefing the NIAMS Coalition honored three congressional champions for their dedication and leadership in supporting biomedical research. Representative Michael Burgess, MD (R-Texas), has sponsored and supported legislation in several important areas funded by NIAMS, many of which affect women disproportionately, including osteoporosis, osteoarthritis, and lupus. Representative Anna Eshoo (D-Calif.) remains an ardent supporter of medical research and a strong champion for arthritis patients and the rheumatology community. Senator Tom Harkin (D-Iowa) led the charge to double NIH’s budget in the 1990s, and continues to show great leadership and support as the chair of the Committee on Health, Education, Labor, and Pensions, and the Labor, Health, and Education Appropriations Subcommittee.
Participants were inspired by the remarks of passionate patient advocates who live day in and day out with conditions of the bone, joint, skin, and muscle. These patient advocates exemplify how the critical work of NIH and NIAMS is improving the lives of patients with chronic diseases. Janet Stearns Wyatt, PhD, RN, CRNP, executive director of the Institute of Pediatric Nursing in Gaithersburg, Md., voiced appreciation for the recent advancements in arthritis treatments and therapies. Lara Wine Lee, MD, who is a pediatric dermatologist resident at the Hospital of the University of Pennsylvania in Philadelphia and patient advocate, spoke about her passion for finding a cure and for helping others—especially children—with difficult skin diseases. Finally, participants heard from 16-year-old Drew Bonner, who was diagnosed with Duchenne muscular dystrophy at six, yet continues to pursue his dreams and plans to get his driver’s license in the near future.
The briefing also featured two NIAMS-funded scientists: Eric Hoffman, MD, director of the Research Center for Genetic Medicine at Children’s National Medical Center in Washington, D.C., a human geneticist who is developing potentially life-saving therapies for muscular dystrophy patients; and Thomas Clemens, PhD, professor of orthopaedic surgery and co-director of the Center for Musculoskeletal Research at Johns Hopkins University in Baltimore, Md., and a musculoskeletal researcher who is working on cellular and molecular mechanisms to control skeletal development and repair.