Nancye W. Buelow has been an advocate for the rights of people with genetic conditions since she was diagnosed in 1993 with alpha1-antitrypsin deficiency, a genetic disorder known as Alpha-1. A coordinator of the Carolina A1A Support Network, she is Past President of the Alpha-1 Association and an active member of the Genetic Alliance's Executive Board. She now serves as the Alliance's Vice President for Consumers and as a representative on the Consumer Coalition for Health Privacy, March of Dimes GENE Project, and National Patient Safety Foundation® Accountability in Clinical Research Balancing Risk and Benefit Committee. She also helped found and build the Coalition for Genetic Fairness in Washington, DC. In 2000, she was named by the ECKERD and Points of Life Foundations as one of the "100 Women Volunteers Making a Difference."
Debra S. Hall, Ph.D. (c) is a Registered Nurse who works as a Critical Care Development Specialist at the University of Kentucky Hospital. Prior to this position, she worked as a staff nurse with patients who had medical, general surgical, oncological, and cardiac health problems. Ms. Hall is also a Lieutenant Commander in the Navy Reserve Nurse Corps and has served as staff nurse, division officer, and department head of training and administration for her reserve unit. Her primary area of interest is occupational stress, including organizational interventions and work redesign for health care workers, with a focus on Registered Nurses. Ms. Hall, a doctoral degree candidate from the University of Kentucky's College of Nursing, has received grant funding and completed pilot research studies of work-related stressors affecting Registered Nurses.
Kimberley Hinton is the Executive Director of the AIDS Council of Greater Kansas City. She has a long history of service to philanthropic organizations. As the National AIDS Fund's Senior Program Officer, she managed more than $2 million in grants and provided training and development support to its 32 partnerships. While at the United Way's Washington, DC, offices, Ms. Hinton worked with more than 25 not-for-profit agencies and managed the distribution of over $9 million for essential community programs and services, such as emergency food and health services, safe houses for battered women, and local and national crisis response services. She recently joined the advisory board of The Glimmer Fund, which supports women and families following pregnancy loss, and is also a member of the Dartmouth Black Alumni Association.
Theodore Mala, M.D., M.P.H., is the Director of Tribal Relations for the Southcentral Foundation, a nonprofit Alaska Native health corporation under the tribal authority of the Cook Inlet Region, Inc. In this role, he coordinates health initiatives for 53 villages served by the Alaska Native Medical Center and serves as Director of its Traditional Healing Program. He has also served for the last eight years as an Associate Professor of Health Sciences at the University of Alaska, Anchorage, where he founded the Institute for Circumpolar Health Studies. Current President of the (national) Association of American Indian Physicians, Dr. Mala served as Alaska's first Native Commissioner of Health and Social Services from 1991 to 1993. He is an enrolled member of the Buckland Tribe and the Northwest Arctic Native Association in Kotzbue, Alaska.
Lawrence B. Sadwin is the Chairman of the Board of the American Heart Association, one of many volunteer leadership positions he has held during the last 20 years. A retired business executive, Mr. Sadwin's commitment to community service is rooted in his personal victory over heart disease and family history of cardiovascular disease. He is involved with Mended Hearts, a national support group for people with heart disease, and is a member of the National Leadership Council of Research!America. He also served as Vice-Chairman of the Landmark Medical Center and the Rehabilitation Hospital of Rhode Island and has held leadership positions at Congregation B'nai Israel, the New England Region of the Anti-Defamation League, and the Woonsocket YMCA.
John Shlofrock is dedicated to improving health care and quality of life for senior citizens and people with mental illness. He serves as the Chief Executive Officer of Barton Management, Inc., which manages long-term care facilities for people with Alzheimer's disease and mental illness, people in need of rehabilitative services, and a variety of additional health care needs. He is also Vice President of the Illinois Council on Long-Term Care, a trade association that represents 38,000 senior citizens and works with the government and the private sector to create innovative programs that benefit residents of Illinois nursing homes. Mr. Shlofrock has also been involved with running a supportive living facility with Rush-Presbyterian Hospital, a major Chicagoland medical center, as part of a pilot program to provide lower income senior citizens access to assisted living services.
Zelda Tetenbaum, a science and health educator, saw her life change profoundly in 1996 when her 42-year-old son was diagnosed with a brain tumor, glioblastoma multiforme. During her search for information about his illness, Ms. Tetenbaum became involved with the American Brain Tumor Association and the Central Brain Tumor Registry of the United States, which centralizes and compiles incidence and survival rate data on primary brain tumors. She later became involved with the North American Brain Tumor Coalition (NABTC), a network of 13 charitable organizations dedicated to eradicating brain tumors. She now serves on NABTC's Board of Directors and as Chairperson of its Advocacy Committee. Ms. Tetenbaum was a science teacher at Hinsdale Junior High School for 21 years and now works as a consultant for the local school district.
Donald E. Tykeson balances business with philanthropy and advocacy. A pioneer in the communications industry, he is now managing partner of Tykeson/Associates Enterprises, parent company to several Oregon communications companies. He is the founding Director and President of the Tykeson Foundation, which funds health care and medical research, education and arts initiatives, and children's programming. Diagnosed with multiple sclerosis in 1957, he is a National Board Member and Western Area Vice- Chair of the National Multiple Sclerosis Society. He is also a University of Oregon trustee and investment committee member; Sacred Heart Medical Center Foundation trustee; and Oregon Health Sciences Foundation investment committee member.
The COPR brings important matters of public interest forward for discussion and advises and assists in enhancing public participation in NIH activities and in increasing public understanding of the NIH. The COPR will meet on April 15 to discuss its Human Protections Report, health disparities, and research in environmental health sciences. Additional information is available at http://public-council.nih.gov/COPR.asp.