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PAC Member Information

Patient Advocate Committee Member Information


DeMille


     Evelyn Smith DeMille
Believing strongly that, “An ounce of prevention is worth a pound of cure,” Evelyn has participated in numerous medical research studies. In 1981 her son was the first baby born in an insulin pump study funded by the March of Dimes. Coincidently, he was also the first baby born at Boston’s famous Brigham and Women’s Hospital.

From 1992 to 2012 she participated in two groundbreaking breast cancer prevention trials. The trials, (P1 & P2) were aimed at reducing the risk of invasive breast cancer among women deemed at “high risk.” She is currently a research subject in the VITAL study, which is investigating the preventive efficacy of Omega 3 (fish oil) and vitamin D on the development of cancer and heart disease.

Evelyn lives in Arlington, MA, the town where she grew up. She received a Bachelor’s degree from Northeastern University, a Master’s degree from the Simmons College School of Social Work, and a Master of Public Health degree from Harvard University. Evelyn has taken many roles throughout her professional and volunteer careers.

For eighteen years she has been running the Sanborn Foundation in Arlington. A unique charitable organization with a mission to assist residents living with cancer. She sits on the Board of the local visiting nurse agency and was a founding director of the Center for Cancer Support and Education that once existed in town. Evelyn is a volunteer at the Dana-Farber Cancer Institute and served on its Patient and Family Advisory Council.

Erlanger


Dorothy Erlanger
Dorothy Erlanger is a consultant, trainer and speaker with over 30 years’ experience. She brings to her global clients a unique blend of marketing expertise and durable-results consulting experience. Dorothy's capability as an outstanding group facilitator with a continuous emphasis on actionable outcomes makes her a sought after planning session leader.

Ms Erlanger’s in-depth healthcare experience, both in marketing and regulatory, provide unique value to clients. Her work has included a broad range of corporate-wide and region-specific projects in personnel development, strategic planning and process metrics for regulatory compliance.

Following ovarian cancer 3C in 2001, Dorothy has taken on many new ventures:
One major focus is ‘pay it forward’. She has been a Patient Advocate with NRG (previously GOG) for ten years. Locally, as part of the Survivors Teaching Students program she participates in presentations to medical students on OvCa symptoms, treatment experience and outcomes. Also, Dorothy and her therapy dog Newfoundland Justin visit the cancer treatment center at Virginia Commonwealth University Hospital.

And then there’s triathlon: From a starting point of being a total non-exerciser , Dorothy completed her first triathlon after cancer and after 50 years old. Since then, she has competed in over 40 triathlons on four continents. She has proudly competed as part of Team USA in International competitions five times (so far!). And she’s an Ironman triathlete, having completed the 2.4 mile swim, 112 mile bike, 26.2 mile run event. Yes, all in one day (and with a time limit).

Friedman


Sue Friedman
Dr. Sue Friedman was a practicing veterinarian in south Florida when she was diagnosed with breast cancer at age 33. At the time, she was unaware of any familial risk factors for cancer. After her treatment, however, Sue realized from an article about hereditary cancer that she had several indications for a BRCA mutation. In 1997 she tested positive for a BRCA2 mutation.

Shocked by the lack of awareness and access to genetic information, Dr. Friedman founded Facing Our Risk of Cancer Empowered (FORCE) in 1999 to fill the information void for individuals and families with hereditary breast, ovarian, and related cancers (HBOC), and to help them advocate for themselves.
Dr. Friedman has eighteen years of experience assessing and addressing the needs of individuals affected by hereditary cancer. She serves as a consumer advisor on committees including the National Comprehensive Cancer Network (NCCN) panel on Genetics/Familial High-Risk Assessment, NRG Oncology in the NCI’s NCORP, and NCORP’s Non-Oncology Specialists Working Group, the CDC’s Advisory Committee on Breast Cancer in Young Women, and the National Cancer Institutes Council of Research Advocates (NCRA). She has participated in peer review for the NCI and the Department of Defense Congressionally Directed Medical Research Program.

Dr. Friedman serves as Co-PI for the CDC-funded eXamining the Relevance of Articles for Young Survivors (XRAYS) Program and Co-PI for the ABOUT Patient-Powered Research Network, directing all FORCE efforts and participation in the PCORI-supported program.

She lives in Tampa, Florida with her husband, Dan, and her son, Beau.

Gavin


Kathleen Gavin
Kathleen Gavin is the Executive Director of the Minnesota Ovarian Cancer Alliance (MOCA), a statewide non- profit organization dedicated to:
  • Advancing ovarian cancer research toward earlier diagnosis and better treatment
  • Educating the public and medical community so women can be diagnosed earlier and accurately
  • Providing support and resources for women and families impacted by ovarian cancer.
MOCA represents more than 1000 ovarian cancer survivors coming from 22 states and over 45,000 supporters. MOCA has a staff of 7, a Board of Directors of 14 a majority of whom are ovarian cancer survivors and a medical advisory board of 21 medical and gynecologic oncologists.

Gavin manages MOCA’s research grant program which has awarded more than $7 million in the state of Minnesota. This is a competitive RFP process that engages both national experts and consumer advocates as reviewers. In 2017, MOCA launched a national funding program for research on early detection. In addition, MOCA offers a broad range of education, outreach and support services as well as scholarships to oncology nurses and “Dream Awards” for women with ovarian cancer.

Gavin has been a patient advocate for NRG and legacy group GOG since 2009 and also serves as a patient advocate on the Mayo Ovarian SPORE as well as the Stand Up 2 Cancer Ovarian Cancer Dream Team. She has a BA in Political Science from University of Illinois and a Masters in Public Health from Columbia University. In addition she has received training through the Scientist Survivor Program of AACR.

Gines


Venus Ginés
Ms. Venus Ginés, a 25-year breast cancer survivor, is a faculty member of the Department of Medicine at Baylor College of Medicine in Houston, teaching cultural competence and health literacy, as well as conducting research on Latino medical mistrust. Venus is also a Texas State Certified Promotores/Community Health Workers Instructor. 

In 1997, Venus founded Día de la Mujer Latina, Inc., (DML) a national non-profit organization, one of the largest Latina breast and cervical cancer network, celebrating its signature health fiesta in 40 states, Puerto Rico and Dominican Republic, providing the medically underserved Latina community with culturally and linguistically proficient health education, early detection screening for chronic diseases, culturally-tailored preventive programs for Latino teens and patient-centered navigation. She also trained over 1400 Promotores (Community Health Workers) and 33 Instructors.

Today, Venus is actively training CHWs as Community Navigators, i.e. Community Health Workers who transition into Patient Navigators. She chaired the HHS National Promotores Initiative and has trained and certified employees of the City of Houston Health Dept, Austin EMS Dept as well as Navigators. 


Good


Barbara C. Good, PhD
Barbara Good is a medical writer, editor for NRG Oncology, and Director of Scientific Publications for the NSABP Foundation. She is a member of the Publications Committee of NRG Oncology and acts as NRG's Operations Office representative to the Advocacy Committee. Over the years she has served as managing editor of a medical journal, senior medical writer for ECOG, editor/writer in radiology at the University of Pittsburgh, and medical editor in the research division of the Cleveland VA Health System, and for several years she taught medical writing in the Department of English at Carnegie Mellon University. She is a former national president of the American Medical Writers Association, an organization of which she is also a Fellow.

Dr. Good is a breast cancer survivor, and in addition to authoring and editing articles in the medical literature has written numerous pieces for the lay press on the detection and treatment of breast cancer. In the early 90s she co-authored an application to the Board of Sponsors of National Breast Cancer Awareness Month describing the Breast Care Centers of Magee Womens Hospital in Pittsburgh that won the Sponsors Award for "most outstanding local breast cancer awareness program" in the nation. During that same period she completed her dissertation, a research study of the use of a computerized program designed to aid radiologists in interpreting mammograms, while working part-time at the Magee Womens mammography center.

Since 2005 Dr. Good has written and edited a quarterly column in the Pennsylvania Breast Cancer Coalition's newsletter Frontline on current research in breast cancer, and she occasionally contributes to the organization's online publication Pink Link. As a result of her own experience with breast cancer, she advocates for and is enthusiastic about the use of support groups to help women diagnosed with breast cancer.

Halpin-Murphy


Pat Halpin-Murphy
Pat Halpin-Murphy is the President and Founder of the PA Breast Cancer Coalition, a statewide nonprofit that represents, supports and advocates for breast cancer survivors and their families. She is a breast cancer survivor, political scholar and is recognized by the White House as a Champion of Change for her unparalleled work advocating for women's health care and insurance coverage.

Pat grew up in Philadelphia, earning a Master of Science degree in Economics from Drexel University, a Master of Arts degree in Political Science from the University of Pennsylvania and a Bachelor of Science degree in Education from West Chester University. She had a notable career in state and national government, serving as an advisor to Governor Robert P. Casey, U.S. Senator Harris Wofford and U.S. Secretary of Labor Robert Reich. Halpin-Murphy serves as a board member of the NSABP Foundation, and she is a Gubernatorial Appointee to the Pennsylvania Cancer Advisory Board.

While at the helm of the Coalition, Pat led the fight for Pennsylvania's Free Treatment program for breast cancer and took the lead in requiring insurance coverage of breast cancer surgeries. Halpin-Murphy's own survivor story inspired her involvement with Sen. Bob Mensch's Breast Density Notification Act, a law that requires mammography centers to inform women of their breast density level. Because of her initiative, Pennsylvania also became the first state in the nation to require insurance coverage for 3D mammograms.

Pat is the recipient of numerous awards and honors including the first prestigious Hannah Penn Award for Civic and Volunteer Leadership. She was named a Distinguished Daughter of Pennsylvania and selected by the National Governors Association to receive its Distinguished Service to State Government Award.

Hollowell


Faye Hollowell
Faye Hollowell is the founder of Brown Buddies; a personal independent patient advocacy entity committed to respectful inquiries and enhanced comprehension for the patients, while accompanying patients to doctor visits. The Brown Buddies effort is dedicated to her late brother who lost his battle to cancer thus beginning her passion to serve as a second ear.

Faye holds a BS degree from Phoenix University. She is a retired Internal Auditor from General Motors Corporation. Faye Hollowell’s current affiliations:
  • American Cancer Society - Community Health Advisor Mid-South Division
  • Memphis Breast Cancer Consortium (formerly known as The Memphis Project) – created to address the enormous disparity of breast cancer deaths among African American women in Memphis
  • National Patient Advocate Foundation/Patient Advocate Foundation –dedicated to advancing person-centered care for everyone facing a serious illness. Faye received the Outstanding Advocate Award at 2017 Patient Congress, Washington, DC.
  • National Arthritis Foundation patient/volunteer;
  • National Retirees Legislative Network - TN State Leader and helps develop, identify, and rally support for federal legislation that guarantees fair and equitable treatment of retirees and future retirees.
  • NRG Oncology Group Patient Advocate Committee (Health Disparities - Special Populations) - patient advocate bringing a patient-oriented viewpoint to the research process and communicating a collective patient perspective. Contributor to RTOG Cultural Competency and Recruitment Training Manual.
  • Tennessee Palliative Care Taskforce – examine the current status of palliative care, its existing barriers, services and related resources in Tennessee and develop recommendations to address concerns associated with the availability of palliative care.
Faye has traveled as an active short-term missionary in Africa (3 trips), Belize, Russia, the Philippines and Thailand (2 trips).

Ingalsbe


Barbara Roth Ingalsbe
Barbara Roth Ingalsbe, M.S., is a 19-year soft tissue sarcoma survivor and a patient advocate, especially for rare cancers. She presented information about health disparities to the President's Cancer Panel in October 2000. She was one of the original members of NCI's CARRA program, Consumer Advocates in Research and Related Activities, from 2001-2014. CARRA was designed to seek patient perspective by training patient advocates to participate in peer review panels. She has been a member of ACOR, Association of Online Cancer Resources, since 1998. ACOR is a unique collection of online cancer communities designed to provide timely and accurate information in a supportive environment. She became a member of the RTOG patient advocacy group in 2009 and is currently a member of NRG's patient advocacy group.

Miller


Debbie Miller, PhD
In 2006, Debbie Miller had surgery for a pelvic mass that was diagnosed as Stage IIc clear cell ovarian cancer. As a faculty member at the University of Texas Southwestern Medical Center, she had the opportunity to research this disease and decided to enroll in a Phase 2 front-line clinical trial for a new ovarian cancer treatment. Six years later, she retired from the medical school and since then has been active as a patient advocate for women with gynecologic cancers.

Some of the organizations she has had the opportunity to work with include: The Department of Defense CDMRP Ovarian Cancer Research (Consumer Reviewer) and Advocate Advisory Board for Long-Term Survivors Project (2008-present); Gynecologic Cancer Steering Committee (2010-2016); Gynecologic Oncology Group now NRG Oncology (2008-present); National Ovarian Cancer Coalition Leadership Committee, Dallas/Fort Worth Chapter (2007-2014); Ovarian Cancer National Alliance Program Facilitator for Survivors Teaching Medical Students (2008-2014) and UT Southwestern Harold C. Simmons Comprehensive Cancer Center Protocol Review and Monitoring Committee (2015-present).

In 2012 with the support from several other cancer survivors, Debbie founded a 501(c)3 nonprofit organization, Ovarian Cancer Trial Awareness Network & Empowerment (OCTANE) whose mission is to advance the importance of ovarian cancer clinical trial awareness.

Palos


William Palos
William Palos, was born April 22, 1936, to John and Virginia Palos in Moline, IL and raised in the Greater Quad Cities Illinois. He graduated from Moline Community College with extension courses from the University of Iowa in Quality Engineering. Mr. Palos was an employee for 8 years at Bendix Corporation in Davenport, Iowa, and transferred to the Rock Island Arsenal Research Lab and finished his career in Product Engineering in the Weapons Command. He retired as Chief in the Weapons Operation Division on 1993 after 34 years of service.

All the men in his family had prostate cancer and his father, 3 brothers and nephew died from prostate cancer. Bill found that he had prostate cancer in 1994 and elected to have Bracky Therapy (Seed Implants). He was on the American Cancer Society Board in Iowa and helped the ACS of Illinois. He started a PC Support group in the Quad Cities (population of 800,000) that has over 500 members and established an effective website www.ustoogqc.org.

He was a Regional Director for Us TOO International, Inc. for several years, elected to Board of Directors of Us TOO and helped numerous organizations around the country with establishing active support groups.

He still has a very good connection with Us TOO. He conducts briefings twice a year to future chiropractic doctors on various issues dealing with prostate cancer and encourages them to direct their patients to a doctor working with prostate cancer patients.

Bill is a patient advocate for the National Cancer Institute and has been a patient advocate for (RTOG) NRG Oncology for the last 6 years. He has reviewed numerous research proposals and provided comments from a patient's point of view and concerns getting patients to sign up for the research program. In addition, he has offered recommendations on how to encourage minorities to sign up for the program.

Pracht


Laurel Pracht
Laurel J. Pracht is a Research Patient Advocate who represents the patient perspective as a member of NRG Oncology. Laurel, an eighteen year late-stage ovarian cancer survivor, has been a patient advocate for the past sixteen years. Her advocacy with like-minded Washington University nuclear medicine physicians, with a goal of PET scan coverage, led to the first collaboration between Medicare and the private imaging community via the National Oncologic PET Registry resulting in a National Coverage Determination.

Laurel is a member of:
• NRG Oncology Cancer Care Delivery Research Committee
• NRG Oncology Cancer Prevention and Control Committee
• NRG Oncology Patient Advocate Committee
• NCI Symptom Management and Quality of Life Steering Committee
• NCI Patient Advocate Steering Committee
• Patient-Centered Outcomes Research Institute (PCORI) Ambassador
• Medicare QIN-QIO Beneficiary and Family Advisory Council
• Faculty, ASCO/AACR Methods in Clinical Cancer Research Vail, CO Workshop
• Consumer Reviewer, Dept. of Defense Ovarian Cancer Research Program

Laurel founded the West Valley Ovarian Cancer Alliance, a 501(C)3 organization in Arizona. She conducts a yearly charity event, the Teal Ribbon Golf Tournament with net funds directed to ovarian cancer research.

She is a past patient advocate with the Society of Nuclear Medicine and Molecular imaging Patient Advocate Committee, as well as the Southwest Oncology Group, Gynecologic Committee. She was an inaugural member of the PCORI Patient Engagement Advisory Panel.

Laurel is a graduate of the University of Nebraska with a dual Bachelor of Science degree.

Scott


Cynthia Rixey Scott
Cynthia Rixey Scott had gamma knife radiosurgery in 1999 for a right cavernous sinus meningioma. Since her diagnosis she has been committed to raising awareness of clinical trials and national advocacy opportunities on behalf of the brain tumor and other cancer communities.

Cindi is active in online Facebook and other internet brain tumor support groups. She is a long time member of the University of Colorado Hospital Brain Tumor Support Group. Cindi has also been an advocate with the Lance Armstrong Foundation and the National Brain Tumor Society, participating in advocacy efforts on Capitol Hill representing Colorado. She is a former Board member of the North American Brain Tumor Coalition. Cindi was a patient advocate for many years with RTOG, a NRG legacy organization. She is currently an adviser to the Brain Science Foundation, which support brain tumor cutting edge research and works to improve patient care.

Cindi graduated from American University, Washington DC. She is a returned Peace Corps Volunteer, Marshall Islands 1969-1971. Cindi received a law degree from the University of Denver in 1979. She is a retired attorney, who represented Social Security disability claimants. Cindi resides in Denver, Colorado and is the mother of two daughters.

ScottL


 Louise F. Scott, LSW
A licensed social worker with over 25 years of experience, Ms. Scott has worked in both the public and private sectors. Ms. Scott has developed and implemented state and federal government policies, managed nonprofit initiatives and supported health programs and outreach efforts in the faith community. She is a ten year colon cancer survivor. Her guiding principle is to whom much is given much is required.

Scroggins


Mary (Dicey) Jackson Scroggins, MA
Mary Scroggins, an ovarian cancer survivor and health activist—is a writer, producer, and founding partner in Pinkie Hugs, LLC (a mother-daughter writing and film production firm specializing in social justice–focused documentaries). She is also co-founder of In My Sister’s Care, an organization focused on improving gynecologic cancer awareness and care for medically underserved women and on eliminating health disparities. Her advocacy work is driven by a commitment to health equity.
 
She was the recipient of the 2016 AACR Distinguished Public Service Award. With longstanding relationships throughout the advocacy and research communities, Mary is a member of the AACR Minorities in Cancer Research Council, the executive committee for the “Globe-athon to End Women’s Cancers,” the leadership committee for the MD Anderson Cancer Center’s “Women’s Cancer Moon Shot Program,” the NCI’s Cancer Prevention and Control Central Institutional Review Board, and the African Organisation for Research and Training in Cancer. She is also chair of the Advocate Advisory Board of a DoD-funded Consortium for Long-Term Ovarian Cancer Survival. Previously, she was a member of NCI’s Gynecologic Cancer Steering Committee, a co-chair of NCI’s Patient Advocate Steering Committee, and a peer reviewer and integration panel member for the DoD Ovarian Cancer Research Program.

An eclectic writer with a master’s degree from Johns Hopkins University, Mary has published essays and articles on topics such as cancer survivorship, health disparities, and medical ethics and social justice-infused fiction. She is on the editorial advisory board of Cancer Today.

Simon


Thomas G. Simon
Patient Advocate and Volunteer for NRG and various other non-profit/charitable organizations
Since retiring in 1999, Tom has been involved in volunteering with various N-Ps and Charitable Organizations, Specifically: helping cancer survivors through Support Groups and providing assistance, support and guidance through the maze of cancer treatments and Clinical trials; helping Atrial Fibrillation survivors by advice and guidance in addressing their disease and options available; helping Seniors in need of transportation assistance to medical appointments, and fund raising efforts for Charitable organizations.
 
Tom initiated his volunteering after spending 30+ years in the Private sector, namely: A Pharmacy graduate, working in Pharmacy, FBI, United Airlines, Southern Airways, Georgia-Pacific, and Georgia Gulf. His varied background along with administrative, managerial and operational experience enabled him to segue into a life of volunteerism. His passion lies in helping those in need (survivors, who, for no fault of their own, have contracted a disease and are in need of help in many different ways): Support, guidance, hope, options, learning, sharing, encouraging, resources available, etc.

His involvement has ranged from: President of The Lung Cancer Caring Ambassadors Program, President of the St. Joseph’s Cancer Survivors Network (CSN) Executive Committee, Facilitator of a Lung/General Cancer Support Groups (CSN), FDA Patient Representative/Consultant and Member of the FDA Oncology Drug advisory Committee, FDA Cardiovascular and Renal Drugs Advisory Committee and Microbiology Devices Panel of the Medical Devices Advisory Committee, Patient Advocate for the RTOG, CALGB and presently, NRG Oncology (NCI Cancer Cooperative Groups), and member of local and national N-P/Charitable organizations whose purpose is to raise funds to provide help and support for the sick, needy and indigent in the community.

Taylor


Lisa Taylor
Lisa has been working with NRG Oncology since 2008, currently with the Uterine Corpus Committee and previously with the Developmental Therapeutics Committee. She is also a member of NCI’s Uterine Task Force. She has served as Faculty for ASCO/AACR’s weeklong Methods in Clinical Cancer Research Workshop, and as a member of the DSMB for a Phase II therapeutic vaccine trial in cervical intraepithelial neoplasia. Recently she presented the patient perspective on the development and validation of companion diagnostics at NCI’s annual AAADV Workshop.

Her involvement in advocacy is driven by personal loss of family members and friends, and by her own experience with thyroid cancer. Professionally, she is President and Founder of Packers Falls Group, Inc., a small consultancy which focuses on Commercial Development for both small and large biopharmaceutical companies. As a result, she has worked with patients and treatments across many types of cancers. She holds an MBA from Harvard University and received her Bachelor’s in Human Biology at Stanford University. She is based in the greater Boston area.
Copyright 2017 by NRG Oncology