Who we are:
The Patient Advocacy Committee was instituted by COG to include the perspectives and input of childhood cancer survivors and families in the design and implementation of cooperative group clinical trials. PAC members, who have been involved in the pediatric cancer experience as survivors of childhood cancer, parents or family members or as professionals working with children, are called upon to offer liaison representation and advice to COG scientific and administrative committees. The committee is currently made up of 7 parents whose children are survivors or deceased, 2 survivors of childhood cancer, three at-large members who are from the bioethics, scientific or administrative committees of COG, and the Executive Officer of COG. Short bios are included at the end of this report.
Our Mission Statement:
The Patient Advocacy Committee, an integral part of the Children's Oncology Group, will work to enhance communication and increase understanding between childhood cancer patients, their families and the research community. Our mandate is to aid in the development of scientific programs that advance our ability to prevent and cure childhood cancer while responding to the medical, social and personal effects of cancer treatment.
What we do:
The PAC is a research advocacy group, providing the patient/survivor/family perspectives throughout the scientific process of designing and implementing cooperative trials. PAC members participate in the semi-annual COG Group Meetings and participate in a variety of committees involved in the design and implementation of clinical trials. These include the Disease Committees for: ALL, Myeloid, Bone Sarcoma, CNS, Soft Tissue Sarcoma and Neuroblastoma; and Other Committees such as: Adolescent and Young Adult, Bioethics, Nursing, End of Life, Data Safety Monitoring and Late Effects. One of the PAC members is a liaison to the Coalition of National Cancer Cooperative Groups, Patient Advisory Board. In addition to participation in the COG-wide scientific meetings, some PAC members participate in interim disease committee meetings as needed throughout the year. PAC members also meet via monthly conference calls to update one another on research activities within their committees, as well as present issues of concern to the patient/family community as they relate to COG studies.
What we are working on:
PAC members currently participate on working committees advocating for:
PAC members are also active in other cancer-related events. PAC members have participated in Childhood Cancer Days, President's Cancer Panel, Institute of Medicine and NCI meetings.
How to reach the Patient Advocacy Committee:
If you have concerns or suggestions that you would like to share with the Patient Advocacy Committee, please contact us. We are always interested in the concerns of the survivor/family community, especially as they relate to access, understanding of, and participation in COG clinical trials. Keep in mind that we are a research advocacy group made up of volunteers. It might take a little while to respond to your inquiries or comments. It should be noted that we do not do ombudsman work for individuals having difficulties with their individual hospital or physician. We suggest that you contact your physician or hospital administration with those types of concerns. We also are unable to assist with financial assistance inquiries. Please contact your hospital social service.You may reach the COG-PAC via the COG Operations Office:
Missy Layfield, Chair
Patient Advocacy Committee
COG Operations Center
P. O. Box 60012
Arcadia, CA 91066-6012
You may also email the PAC at: cog-pac@cfu.net
We are frequently asked how someone might join the PAC. At the present time, there are no vacancies on the PAC. Anyone who wishes to be notified of future calls for applicants may send an email to the above address.
Patient Advocacy Committee Bios:
Missy Layfield (Chair) Missy's son was diagnosed with high risk Acute Lymphoblastic Leukemia in 1995, with relapse in 1999. He is now off treatment. She is a physical therapist and athletic trainer in Iowa. Missy has been active with the online childhood cancer support lists since 1995. She serves on the ALL Committee, the Adolescent and Young Adult Committee and the Executive Committee.
Lise Yasui (Vice Chair) Lise's son was diagnosed with intermediate-risk neuroblastoma (NBL) in 1997 at age 2 and was successfully treated at a COG-member institution. Lise is the patient advocate to NANT (New Approaches to NBL Therapy, a phase I trial consortium). She is a former administrator of and an active participant in an international ACOR listserv for NBL families. She serves on COG's NBL and Web Task Force committees. She is a documentary film producer and fundraising consultant based in Philadelphia.
Joan Darling, Ph.D. Joan's daughter is a survivor of Stage 3 Group III Alveolar Rhabdomyosarcoma (RMS), which was diagnosed in 1996 at the age of 13. Since then, Joan has been active in her local Candlelighters chapter, serving as Vice President of the Board, writing the quarterly newsletter, and developing a website. She also co-administers the ACOR internet mailing list for RMS families. Joan is a biologist and works as an environmental consultant in Nebraska. Within COG, she serves on the Late Effects Committee and the Soft Tissue Sarcoma Committee.
Anita Khayat Anita is the Executive Officer of the Children's Oncology Group.
Winnie Kittiko Winnie's teenage son died of osteogenic sarcoma in 1999. She is a registered nurse with over 20 years experience in obstetrics who now works in pediatric oncology. She lives in Atlanta, and is on the Bone Sarcoma, the Nursing Discipline and End-of-Life Care Committees.
Peggy Kulm Peggy is a registered nurse who serves on the Nursing Discipline committee and is a member of the joint NCCF/COG joint web development Task Group. She was a member of the Children's Cancer Group (CCG) for 8 years and served in support of the Transition Team when the 4 pediatric cancer clinical trials groups merged to become the Children's Oncology Group. Peggy and Anita co-authored the original section of the CCG grant application in 1998 which resulted in the genesis of the Patient Advocacy Committee within CCG.
Louis A. Leone Esq. Louis is the father of an APL survivor and is a trial attorney representing school districts and governmental agencies in the San Francisco Bay area. He serves on the Myeloid Disease Committee. Louis' daughter relapsed and recently received an autologous stem cell transplant. She is again in remission.
Angie Pemberton. Angie is a survivor of metastatic, Ewing's Sarcoma. She was diagnosed in 1977 and has had recurrences in 1982 and 1985, with a hip disarticulation amputation in 1982. She currently works as a counselor for at-risk high school students in Jefferson City, Missouri. In the past, she has directed Camp Quality, researched and given lectures on childhood cancer and survivorship issues, and is in her first year on the Patient Advocacy Committee (PAC).
Becky Pentz Becky is a bioethicist who serves on the Bioethics and the Lymphoma/Leukemia Data Monitoring Committee. She is the Research Ethicist at the Winship Cancer Institute, Emory University, Atlanta, Georgia.
Fran Wiley Fran is a registered nurse who serves on the Nursing, Data Monitoring and Bioethics Committees.
Catherine Woodman Catherine's 9-year old son is a standard risk medulloblastoma survivor. She is a psychiatrist and an epidemiologist on faculty at the University of Iowa. Catherine serves on the CNS Disease Committee and the Phase I/II Data Monitoring Committee.
John Mussman John is the parent of a 13 year old survivor of a stage IV germ cell tumor. He is an attorney in Chicago. John was a patient advocate with POG prior to the creation of COG. He serves as the COG representative on the Patient Advisory Board of the Coalition of National Cancer Cooperative Groups.
Octavio Zavala Octavio is a survivor of high-risk Acute Lymphoblastic Leukemia. Diagnosed in 1984, he has been in remission for 19 years. He currently works as Project Coordinator of Teen Impact, a support program for adolescent cancer survivors based at Children's Hospital Los Angeles (CHLA), and as a Research Assistant in the Behavioral Sciences Division of the Children's Center for Cancer and Blood Diseases at CHLA for various psychosocial studies. He also serves on the CHLA Committee for Clinical Investigation (IRB).