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NIH Office of the Director (OD)

Thursday, June 23, 2005

OD Office of Communications and Public Liaison (OCPL)

NIH Director’s Council of Public Representatives Welcomes Seven New Members

Bethesda, Maryland — The National Institutes of Health (NIH) has selected seven individuals to serve as members of the Director’s Council of Public Representatives (COPR). Since 1999 COPR has advised the NIH Director on issues of public importance.

“These new members bring a wealth of knowledge, a clear, public perspective, and professional experience in the areas of public service, health care, medicine, and underserved communities, and the visual media, as well as a strong commitment to the advancement of public health and medical research. I am delighted to welcome them to the Council,” said NIH Director Dr. Elias A. Zerhouni, M.D.

The new members, who join 12 current members of the council, are Nicole Johnson Baker of Pittsburgh, Pennsylvania; Christina Clark of Metamora, Michigan; Valda Boyd-Ford of Omaha, Nebraska; Cynthia A. Lindquist of Devils Lake, North Dakota; Nicolas Linares-Orama, Ph.D. of San Juan, Puerto Rico; Michael Manganiello of Washington, D.C., and Marjorie Mau, M.D., M.S. of Honolulu, Hawaii.

Nicole Johnson Baker has served as an international spokesperson for diabetes issues for more than six years. A former Miss America, she travels extensively to promote awareness, prevention, and early detection of the “hidden killer,” diabetes, and spends several days a month lobbying on Capitol Hill in Washington D.C. for diabetes-related causes. Ms. Johnson Baker was recently appointed the first Ambassador for the International Diabetes Federation’s Life for a Child program. Children with type 1 diabetes in many developing countries have a life expectancy of only 1 to 2 years. This program provides care, supplies, and education for children with diabetes in underserved areas. In addition, she works with state legislatures to improve insurance coverage and general health care for the millions of individuals with diabetes. Ms. Johnson Baker is also one of the hosts of dLife, a weekly diabetes talk show on CNBC which aims to create a community and “clubhouse” of people with diabetes.

Christina Clark, whose son was diagnosed with ALS (Lou Gehrig’s disease) in 1997, left her career in local politics and community service to establish the Foundation for Interdisciplinary Motor Neuron Medicine (The ALS BioTeam). The foundation has been the catalyst for using interdisciplinary strategies in several ALS research studies relating to drug screening and stem cell research. The ALS BioTeam focuses on accelerating therapeutic opportunities by acting as a voluntary facilitator for inter-academic and industry collaborations. Ms. Clark is a trustee of the ALS Association (ALSA) and serves on ALSA’s Research and Advocacy Committees, and she often serves as ALSA’s board liaison at scientific meetings.

Valda Boyd-Ford is the Director of Community and Multicultural Affairs at the University of Nebraska Medical Center. She is responsible for developing community collaborations that address the health of the community, especially the health of the most vulnerable populations. Her work emphasizes eliminating health disparities and promoting community involvement in the health improvement process. She has taught in the School of Nursing at Creighton University and is the executive director of the Center for Human Diversity, which offers an intensive 10-month course on cultural competency for health care professionals. Nebraska cable television viewers are familiar with Ms. Boyd-Ford as the host and executive producer of Valda’s Place, a talk show on health and diversity issues.

Cynthia Lindquist, also known as Ta’sunka Wicahpi Win (Star Horse Woman), is President of Cankdeska Cikana (Little Hoop) Community College in Fort Totten, North Dakota. Her career began when she became the Health Director/Planner of the Spirit Lake (Dakota) tribe in the early 1980s. Ms. Lindquist wrote and developed the Northern Plains Healthy Start initiative, and she is an adjunct faculty member at the University of North Dakota School of Medicine and Health Sciences. Other professional experience includes serving as Executive Director of the North Dakota Indian Affairs Commission (Governor-appointed Cabinet position) and as Senior Advisor to the Director of the Indian Health Service in Washington, D.C.

Nicolas Linares-Orama, Ph.D. is Director of the Filius Institute of Disability and Rehabilitation Research at the University of Puerto Rico. Filius is a research center that also includes outreach to Latino/Latina audiences and in-reach to organizations. Dr. Linares-Orama is a Professor of Language Pathology at the Medical Sciences Campus of the University of Puerto Rico and has developed many research and training projects, including the Assistive Technology Project, the Center for Interdisciplinary Intervention, the Infantile Autism Project, and the Initiative for Correctional Interdisciplinary Services. He served as Director of the Department of Communicative Disorders at the University of Puerto Rico for 12 years.

Michael Manganiello is the Senior Vice President and Director of Government Relations of the Christopher Reeve Paralysis Foundation (CRPF), which he co-founded. The CRPF funds research on treatments for paralysis caused by spinal cord injury and other central nervous system disorders and works to improve the quality of life for people living with disabilities through its grants program, paralysis resource center, and advocacy efforts. Mr. Manganiello is Director of CRPF’s advocacy arm, the Hope Network, and is Chairman of the Paralysis Taskforce, a joint program between the Centers for Disease Control and Prevention and CRPF. He has a close working relationship with the National Institute for Neurological Disorders and Stroke and acted as an advisor to former U.S. Department of Health and Human Services Secretary Tommy Thompson on issues relating to HIV and HIV prevention.

Marjorie Mau, M.D. is Professor and Chair of the Department of Native Hawaiian Health at the John A. Burns School of Medicine of the University of Hawai‘i. Dr. Mau, a Native Hawaiian, was born and raised in Honolulu and has spent more than 12 years working with Native Hawaiian communities to improve their health status and eliminate health disparities. The Department of Native Hawaiian Health is the first of its kind in an accredited U.S. medical school. The department’s role is to highlight the unique contributions the indigenous people of Hawai‘i bring to the state, the United States, and the international community, and to improve access to health care in underserved communities of Native Hawaiians and Pacific Peoples throughout Hawai’i. As a physician, Dr. Mau provides diabetes and endocrinology subspecialty services to patients on the island of Molokai, where approximately 60% of the residents are of Native Hawaiian ancestry.

New COPR members joined the full Council for their first meeting on April 28, 2005, at the NIH campus. The meeting highlighted topics including the role of public trust in medical research and clinical trials, and how NIH solicits public input into its operations. NIH Director Elias Zerhouni, M.D., chaired the meeting. The COPR next meets in the fall, 2005.

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 NIH. Additional information is available at www.getinvolved.nih.gov.

The National Institutes of Health (NIH) — The Nation's Medical Research Agency — is comprised of 27 Institutes and Centers and is a component of the U. S. Department of Health and Human Services. It is the primary Federal agency for conducting and supporting basic, clinical, and translational medical research, and investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

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