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
- * 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
- 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
- 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