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National Cancer Institute (NCI)

Monday, January 10, 2005

NCI Press Office

NCI Announces Appointment of 15 Members to its Consumer Liaison Group

Twelve consumer advocates have taken seats as new members on the National Cancer Institute (NCI) Director’s Consumer Liaison Group (DCLG), joining three returning members, as the NCI increases its initiatives to reach out to the cancer community.

Announcing the new DCLG, NCI Director Andrew C. von Eschenbach, M.D., said: “NCI continues to broaden and deepen our communications efforts with the cancer advocacy community and I am very encouraged that we now have so many new perspectives. As we work toward our challenge goal of eliminating the suffering and death due to cancer by 2015, it is important that NCI shares its progress with everyone who stands to benefit, and responds to any concerns the cancer community may have. The DCLG will play a vital role in this communication.”

The 12 new and three returning members comprise a group that has had personal or professional experience with cancer in a broad spectrum of disease sites, including kidney, ovarian, breast, and prostate cancers and leukemia and lymphoma. The members are active in survivor and community groups and represent underserved populations.

Launched in 1997, the DCLG — a federally chartered committee — was the first all-consumer advisory board at the National Institutes of Health (NIH). The DCLG’s 15 members advise the NCI director about a wide variety of issues, programs, and research priorities from the perspective of people whose lives are affected by cancer. Since the establishment of the DCLG, other NIH institutes and centers have created consumer advisory boards or councils to reach out to the public affected by their research. Because NIH research is funded by taxpayer money and ultimately benefits the public, the institutes and centers seek public input into many aspects of their operations and activities.

New DCLG Chairman Douglas Ulman, director of survivorship at the Lance Armstrong Foundation and a returning DCLG member, said, “We want to bridge the gap between the cancer advocacy community and NCI …so people understand how they can go about speaking with the institute and effecting change.”

“The DCLG has historically been a wonderful group of passionate people, and this new group is the most diverse group of cancer advocates that we have ever had, representing all kinds of people with cancer,” Ulman added.

Among the NCI initiatives the DCLG will address is a new Web site, NCI Listens and Learns, which will provide a way for cancer advocacy groups and the public to post their opinions on a variety of topics important to the cancer advocacy community. The DCLG also plans to hold a town hall meeting, or cancer summit, with invitees from across the nation. The DCLG’s work will support other NCI initiatives, such as efforts to reduce health disparities and make progress on cancer survivorship issues.

Members of the new DCLG are:

  • Margaret L. Anthony, RN, M.H.S., South Carolina Chapter, Yul Brynner Head and Neck Foundation/Hollings Cancer Center/Medical University of South Carolina. Anthony is an oncology nurse and her husband has lung cancer. She develops educational materials, sponsors educational programs and screenings, and advocates for cancer patients with state policymakers.

  • * Vernal H. Branch, Virginia Breast Cancer Foundation/National Breast Cancer Coalition. Branch was diagnosed with stage I breast cancer in 1995, at the age of 45. She soon became involved in helping other women diagnosed with breast cancer, joining several advocacy groups and designing an outreach program for the African-American community in San Diego County, Calif.

  • William P. Bro, chief executive officer of the Kidney Cancer Association. Bro is a 13-year survivor of renal cell carcinoma. He is also a member of the Cancer Leadership Council and the National Coalitional for Cancer Research. He is a founding member of the Illinois Health Access Network. He sits on the Kidney Health Council of the American Foundation for Urological Disease.

  • Lourie Campos, M.P.A., assistant director of policy for special populations at the health center consortium Community Health Partnership. Campos, a Filipina American, survived endometrial cancer and saw her father and brother suffer from colon cancer. Both professionally and as a volunteer, she advocates for the uninsured or underinsured communities. She developed a Women’s Health Advocacy Guidebook.

  • Nancy Davenport-Ennis, founding executive director of the National Patient Advocate Foundation and the Patient Advocate Foundation. Davenport-Ennis is a two-time breast cancer survivor, works to improve health care access, and provides case management and legal services for needy cancer patients. Her advocacy has led to passage of national legislation on clinical trials and other health issues.

  • Bobbi de Córdova-Hanks, founder and director of the Bosom Buddies program of the Women’s Center of Jacksonville, Fla. Córdova-Hanks survived both advanced breast cancer and metastatic thyroid cancer and wrote a book with her husband about her experience, Tears of Joy. She has hosted and moderated the American Cancer Society’s Cancer Survivors Network Webcasts.

  • Beverly Laird, Ph.D., a member of the American Cancer Society regional affiliates and the North Central Alabama affiliate of the Susan G. Komen Breast Cancer Foundation. Laird was diagnosed with breast cancer at age 39 and has advocated for more than 14 years, receiving numerous awards for her volunteer work in patient services. She has a doctorate in public health and works in orthopedic surgical instrumentation.

  • Sylvia M. Ramos, M.D., M.S., board member and former president of People Living Through Cancer and member of the Intercultural Cancer Council. Ramos is also clinical professor of surgery at the University of New Mexico School of Medicine. Her professional and volunteer work with cancer patients spans more than 30 years. She is particularly interested in cancer survivorship and health disparity issues.

  • Eric Rosenthal, medical journalist affiliated with EvocaTalk® Reports. Rosenthal is a free-lance medical journalist and cancer communications consultant who has advocated for 15 years. He writes a column, “Advocacy InSight,” for Oncology Times. He founded and chaired the Cancer Centers Public Affairs Network and served on numerous national cancer-related boards and committees.

  • Mary Jackson Scroggins, M.A., member of the board of directors of the Ovarian Cancer National Alliance. Jackson Scroggins was diagnosed with ovarian cancer in 1996. She is a writer, editor, and educator and serves on a variety of advisory groups, including several that seek to improve access and quality care for underserved populations. She has also published essays about cancer survivorship.

  • Sue Sumpter, R.N., M.S., former board member and now patient services manager of the Leukemia and Lymphoma Society; vice president of the Candlelighters Childhood Cancer Foundation. Sumpter’s son suffered brain damage while being treated for T-cell leukemia and she joined with other parents to help mitigate and remediate against harmful side effects of child cancer treatments.

  • * Douglas Ulman, director of survivorship at the Lance Armstrong Foundation. Ulman was diagnosed with chondrosarcoma as a college student. With his parents, he founded the Ulman Cancer Fund for Young Adults that provides free support, education, and resources, and promotes awareness and prevention of cancer. He also serves on the board of a cancer center and an advisory network.

  • * Marisa C. Weiss, M.D., founder of breastcancer.org. Weiss is an oncologist specializing in breast cancer and her Web site provides ways for women and their families to make sense of complex breast cancer information. She also founded Living Beyond Breast Cancer, which provides education and support for survivors. She co-authored the acclaimed book, Living Beyond Breast Cancer.

  • Celeste Whitewolf, J.D., founder and director of the Native People’s Circle of Hope. Whitewolf was diagnosed with stage III breast cancer and, although a practicing attorney, was unable to afford medical insurance. To be treated, she returned to her Native reservation. Her experience led her to work and volunteer in Native American outreach and training programs.

  • James E. Williams, M.S., co-chairman of the board of directors of the Pennsylvania Prostate Cancer Coalition. Colonel (U.S. Army, Ret.) Williams is a prostate cancer survivor. He is the principal of Jim Williams and Associates, a management consulting firm specializing in prostate cancer awareness, education, and advocacy. He is a member of many non-profit and government cancer groups.

For more information about the Director’s Consumer Liaison Group, go to http://la.cancer.gov/dclg.html.

For more information about cancer, visit the NCI Web site at http://www.cancer.gov or call NCI's Cancer Information Service at 1-800-4-CANCER (1-800-422-6237).

* Denotes returning members

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