Genetic counselors have advanced training in both medical genetics and counseling to best provide personalized help to patients with genetic test results and all that it implies, such as how inherited diseases may affect them or their families, the chance of disease occurrence (or recurrence), and how to make the most informed decisions. Most work in a medical setting and some work in research, and they may specialize in an area such as cancer genetics. The LFS Association’s Genetic Counseling Advisory Group members work in medical settings and collaborate on research. Together, we are working on addressing the needs of our LFS community.
The National Society of Genetic Counselors offers a “Find a Genetic Counselor” feature on their website, with options to meet by phone or person. They also support a patient resource website that may be able to answer many of your concerns regarding genetic counseling. See “About Genetic Counselors” for more information.
Articles of interest relevant to genetic counseling and Li-Fraumeni syndrome:
Members of the LFS Association Genetic Counseling Advisory Group include:
Katherine A. Schneider, M.P.H., L.G.C. – Co-Chair
Katherine Schneider graduated from Yale University with a Masters Degree in Public Health. She is a licensed genetic counselor in Massachusetts. She has 25 years experience in cancer genetic counseling. Ms. Schneider is a Senior Genetic Counselor at the Dana-Farber Cancer Institute. She works in the Center for Cancer Genetics and Prevention and the Pediatric Cancer Genetic Risk Program, and helps oversee the Dana-Farber Cancer Genetics Satellite and Affiliate Program. She is also a member of the Dana-Farber Ethics Committee. Ms. Schneider previously served as President of the National Society of Genetic Counselors and wrote the textbook: “Counseling about Cancer: Strategies for Genetic Counseling”, which is currently in its 3rd edition.
Jenn Perry – Co-Chair
Jenn is married to her best friend and love of her life, Bert, with two wonderful girls. Samantha is 20, just graduated, and started her career in Hairdressing, and Lexi is 11. Jenn currently works with Dunkin’ Donuts Brand serving as an Operations Manager. Jenn enjoys many activities, but her passion is competitive show jumping in the equestrian world. In fact, she has designed and executed two different annual walks for cancer, one of them, Hoofin’ For The Cure, involved her horse Maximus.
Jenn is a 10 year breast cancer survivor who was diagnosed with Li-Fraumeni Syndrome just a few years back. Jenn is committed to advocating for all those who battle cancer, whether they are a patient or a researcher, in creating positive and hopeful outcomes. She always knew it was a possibility that she could develop cancer, as her mother died of breast cancer after an 8 year fight. Her mother taught her to be positive and live her life to the fullest no matter what the circumstances; to see the glass half full with her mother’s inspiration at the forefront.
Jenn knew she found a way to help create solutions when she attended the first Li-Fraumeni Conference in 2010. She is very honored and excited to be the President of the Li-Fraumeni Syndrome Association, Inc. Jenn knew she finally found an avenue in which to make a difference and effect change in an area that has affected not only many members of her family, but so many families around the world. She envisions a world someday where her children, grandchildren, and future family, won’t have to live in fear of the disease we know as cancer.
Rose B McGee, M.S., C.G.C.
Rose completed her genetic counseling training at the University of Pittsburgh School of Public Health. She is a certified genetic counselor practicing at St. Jude Children’s Research Hospital in the Division of Cancer Predisposition. She sees families in a busy clinic, evaluating for cancer predisposition syndromes including Li-Fraumeni syndrome. As well, she is involved in research endeavors that study incorporation of genomics into clinical care and psychosocial impact of cancer surveillance in families with predisposition syndromes. Rose is thrilled to interact further with families and medical providers affected by Li-Fraumeni syndrome through the LFSA.
Bita Nehoray, M.S., L.C.G.C.
Bita Nehoray, M.S., L.C.G.C., is a licensed board-certified genetic counselor specializing in cancer genetics. She received her Master’s degree in Human Genetics and Genetic Counseling from Stanford University. Bita joined the City of Hope Division of Clinical Cancer Genomics in 2012, where she provides cancer genetics services for patients and families suspected to have a hereditary predisposition to cancer, with a focus in Li-Fraumeni syndrome. She is fluent in Spanish and Farsi, and is committed to advancing the provision of cancer genetics services to medically underserved and culturally diverse populations. Other clinical responsibilities include providing pro-bono cancer genetic counseling services to underserved Latino families through an outreach program established by the Division of Clinical Cancer Genomics and supported through government and foundations grants and compassionate funding. Current research projects include assessing the influence of pre-consultative interventions in the uptake of genetic counseling services in Latinas, and understanding the prevalence of somatic TP53 mutations and how they can confound genetic test results and clinical outcomes. She is an active member of the National Society of Genetic Counselors.
Kristen Shannon M.S., L.C.G.C.
Ms. Shannon received her bachelor’s degree from the College of the Holy Cross and her master’s degree in Human Genetics from Sarah Lawrence College. She has been a practicing genetic counselor at the Massachusetts General Hospital Cancer Center’s Center for Cancer Risk Assessment (CCRA) since 1997. In addition to her clinical practice, Ms. Shannon has served on various subcommittees of the National Society of Genetic Counselors. Ms. Shannon is also a member of the NCCN Genetic/Familial High-Risk Assessment: Breast and Ovarian panel. She was an integral part of the Massachusetts Genetic Counselors Licensure task force and served on the Massachusetts Board of Licensure for Genetic Counselors for eight years. She has lectured and published widely in the fields of cancer genetics and cancer genetic counseling.
Kristin Zelley, M.S.
Kristin Zelley is a board-certified and licensed genetic counselor who has worked in the Division of Oncology at the Children’s Hospital of Philadelphia since November 2010. As the primary genetic counselor for the Cancer Predisposition Program, she works with a multidisciplinary team that addresses the needs of children with genetic cancer predisposition. She has a strong interest and knowledge foundation in genetic predisposition to cancer in children, including conditions such as LFS. Her research interests include the psychosocial impact of cancer predisposition syndromes on children and their families, ethical issues surrounding genetic testing of children, and communication with children regarding genetic testing and results.
Wendy Kohlmann, M.S., C.G.C.
Wendy Kohlmann, M.S., C.G.C., is a board-certified genetic counselor with a master’s degree in genetic counseling from the University of Cincinnati and a bachelor’s degree in zoology from the University of Wisconsin. She has worked as a genetic counselor at the University of Texas-M.D. Anderson Cancer Center in Houston and the University of Michigan Comprehensive Cancer Center in Ann Arbor. She began working at Huntsman Cancer Institute as a research associate in 2006. Wendy Kohlmann’s research interests include the inherited basis of melanoma and pancreatic cancer, psychosocial and behavioral outcomes of genetic counseling, and issues for children and adolescents with hereditary cancer syndromes.
Kami Wolfe Schneider, M.S., C.G.C.
Kami Wolfe Schneider, M.S., C.G.C., is a Senior Instructor working full time for Children’s Hospital Colorado in the Hematology, Oncology, and Bone Marrow Transplant Division since June 2013 at the University of Colorado. A 2005 graduate of the University of Cincinnati’s genetic counseling program and ABGC board certified since 2007, she worked as a cancer and prenatal genetic counselor in Memphis, TN for more than 4 years, at which time she provided genetic counseling to mostly adults, but also some children referred from St. Jude Children’s Research Hospital, with or at-risk for Li-Fraumeni syndrome. She then joined Children’s Hospital Colorado’s Clinical Genetics and Metabolism department in December 2009. She initiated and developed the hospital’s first pediatric cancer genetic counseling clinic which began in March 2011, and she has since expanded the genetic counseling services in the Division of Hem/Onc/BMT to include 2 full time genetic counselors covering specialty clinics including Solid and liquid tumor, Neuro-Oncology, Ortho-Oncology, Survivorship, Cancer Predisposition, Bone Marrow Failure, and others. Kami has helped identify, counsel, connect, and coordinate surveillance for children with Li-Fraumeni syndrome in these, as well as in General Genetics, clinics. Kami has co-authored multiple publications on pediatric cancer genetic counseling, and she was the founding chair of the Pediatric Subcommittee of the NSGC’s Cancer Special Interest Group in 2014.
Chieko Tamura, M.S.
Chieko Tamura, M.S., studied genetic counseling as a Fulbright scholar at the joint graduate program of the National Human Genome Research Institute and Johns Hopkins University School of Public health, graduating in 2003. By 2005, she was certified as a genetic counselor by the American Board of Genetic Counseling as well as the Japanese Board of Genetic Counseling. She is a board member of the Japanese Association of Certified Genetic Counselors, and worked as an intern genetic counselor in the USA. She has worked in a variety of settings to include prenatal, pediatrics, adult genetics, cancer genetics, neurogenetics, and infertility, etc. at many different medical institutions, including the Japan’s National Center for Child Health and Development, several university hospitals and major fertility clinics. She has also worked as an associate professor at the genetic counseling training graduate program at Ochanomizu University of Tokyo, and served as co-director of the program. Chieko has also worked in psychosocial genetic counseling, grief counseling, disability studies, research methodology, and bioethics.
Sarah Scollon, M.S., C.G.C.
Sarah Scollon, M.S., C.G.C. is a genetic counselor with the Cancer Genetics and Genomics Program at Texas Children’s Hospital. Her clinical focus is on genetic counseling for patients and families at risk for or diagnosed with pediatric cancer predisposition syndromes including Li-Fraumeni syndrome. Ms. Scollon’s research interests include pediatric cancer predisposition syndromes and educating healthcare providers in recognizing at risk patients and families in order to provide education, advocacy, and increase the adoption of prevention and screening for future cancers. She also has conducted research involving the incorporation of genomic sequencing into the care of children with cancer. Her ongoing research will look into the incorporation of genetic counseling into personalized medicine.
Samantha Culver, M.S., C.G.C.
Samantha Culver, MS, CGC, is a board certified genetic counselor with the Center for Cancer Genetics and Prevention at Dana-Farber Cancer Institute in Boston. She received her MS in Genetic Counseling from Boston University School of Medicine. She sees adult patients with personal and family histories of cancer, and has a special interest in breast cancer genetics and Li-Fraumeni syndrome. In addition to her clinics on the Boston campus, Samantha provides telemedicine services to Concord Hospital in New Hampshire and Eastern Maine Medical Center in Bangor, Maine.
Emily Quinn, M.S., C.G.C
Emily Quinn is a licensed board-certified genetic counselor specializing in pediatric cancer genetics. A native Californian, she received her bachelor’s degree at the University of California, Santa Cruz, before moving to New York City to complete her Master’s degree in genetic counseling at Mount Sinai. Given her passion for cancer genetics and strong desire to work with children and their families, Emily moved to Memphis, Tennessee, in 2014 to join the newly-created Cancer Predisposition Program at St. Jude Children’s Research Hospital. In her role at St. Jude, Emily has worked with many families living with Li-Fraumeni syndrome and has developed a deep appreciation for the profound impact that a diagnosis of LFS has on not only patients, but the entire family. Research interests include development of age-appropriate tools and strategies for children and families to talk about genetics and cancer risk.
Shannon Stasi, M.S., L.C.G.C.
Shannon Stasi is a board certified and licensed genetic counselor in the Department of Laboratories and Brain Tumor Clinic at Seattle Children’s Hospital (SCH). She received her MS in Genetic Counseling from Boston University School of Medicine. She sees pediatric patients with personal and family histories of cancer, and has a special interest in brain cancer genetics and Li-Fraumeni syndrome. She also supports the SCH genetics sub-specialty labs and is part of the consulting team that reviews and approves requests for “send-out” genetic tests. She is involved in developing best practice recommendations related to genetic testing, including appropriate pre-test evaluations, sequential testing strategies, pre-test and post-test counseling, and insurance pre-authorization for genetic tests. She is a member of the leadership team of PLUGS® (Patient-Centered Laboratory Utilization Guidance Services), a national collaboration of institutions working on test stewardship strategies to improve the value of testing for families and providers.
Lamia Fahad Alsubaie, M.S., G.C.
Lamia Fahad Alsubaie is a genetic counselor and blogger specializing in genetic medicine. She graduated from Joan H. Marks Human Genetic Program – Sarah Lawrence College ’15, and received bioethics training as genetic counseling candidate at Columbia Center for Bioethics, as well as pediatrics genetics and cytogenetics training at Columbia Medical Center. She is senior genetic counselor at King Abdulaziz Medical City – National Guard Health Affairs, and she launched the first specialized cancer genetic counseling clinic in Saudi Arabia. Lamia is a part-time research genetic counselor at King Fahad Medical City, and a part-time instructor at the genetic counseling Master’s program at Al-Faisal University. Lamia is part of a clinical team leading the 1000 Saudi familial cancer patients’ initiative to establish the first cancer genetic screening and surveillance program in the Kingdom of Saudi Arabia. Additionally, she is involved in research with the King Abdullah University of Science and Technology, and a multi-language patients resources project with the international special interest group at National Society of Genetic Counselors. Her clinical interest is mainly in onco-genetic counseling, general genetic counseling, and lab genetic counseling. She devotes her efforts in promoting the profession of genetic counseling in Saudi Arabia, and in creating professional content resources for the public, patient families, and health-care providers interested in genetic/genomic science from all over the Arab world. Lamia is also serving as a co-chair for the LFS Association – Saudi Arabia Chapter.
Megan Frone, M.S., C.G.C.
Megan Frone, MS, CGC, is a board certified genetic counselor with the Clinical Genetics Branch (CGB) of the National Cancer Institute (NCI) in the Division of Cancer Epidemiology and Genetics (DCEG), where she serves as the lead the lead genetic counselor for the NCI Li-Fraumeni Syndrome Study. Megan received her Bachelor of Science in Biology (Concentration in Cell & Molecular Biology) from SUNY Binghamton University in 2008 and her Masters in Genetic Counseling from Virginia Commonwealth University in 2010 where she also graduated the Virginia Leadership Education in Neurodevelopmental Disabilities (Va-LEND) program. Prior to joining the CGB, Megan worked as an Adult and Pediatric Cancer Genetics Counselor at UT Southwestern Medical Center in Dallas, TX, and in the Inborn Errors of Metabolism; Down Syndrome Specialty; and General Pediatrics Genetics Clinics at Childrens Health, Dallas. Outside of the clinic, her primary role is the development and implementation of gene variant annotation and classification for various DCEG clinical and research initiatives. Megan is also the lead genetic counselor for evaluation of whole exome data on the Childhood Cancer Survivor Study, a study of several thousand long-term childhood cancer survivors to identify common and rare genetic variants that influence risk of second cancers as well as variants that modify the effects of radiotherapy and chemotherapy and subsequent cancer risk. Megan’s primary interest and focus for the last several years has centered on pediatric cancers, secondary cancer risks in childhood cancer survivors, and bioinformatics and variant curation. Megan served as the Co-Chair of the Pediatric Subcommittee of the Cancer Special Interest Group of the National Society of Genetic Counselors from 2014-2016 and is currently the Co-Chair of the Cancer Special Interest Group Executive Board.
Carly Grant, M.S., L.C.G.C.
Carly Grant received her bachelor’s degree at Haverford College and her Master’s degree in genetic counseling at Brandeis University. She currently works at the Massachusetts General Hospital Center for Cancer Risk Assessment. She previously worked at Dana-Farber Cancer Institute where she saw adult and pediatric patients and worked with several LFS families who impacted her profoundly. Ms. Grant loves the educational and emotional aspect of her work and is particularly interested in the psychosocial needs of families with LFS. Also a runner, Ms. Grant recently raised money for the LFSA while training for her 6th marathon.
Alexandra Suttman, M.S., C.G.C.
Alexandra “Ali” Suttman is a board certified genetic counselor and instructor at Children’s Hospital Colorado in the section of Hematology, Oncology, and Bone Marrow Transplantation. She completed her master’s degree in genetic counseling at the Ohio State University and her bachelor’s degree in ecology and evolutionary biology at the University of Colorado at Boulder. Ali specializes in pediatric oncology, immunohematology, polyposis, and bone marrow failure conditions, with special interest in Li-Fraumeni syndrome. Ali sees patients as a member of a comprehensive care team for patients and families with hereditary disorders, providing pre-test counseling, aid in results interpretation, psychosocial support, and medical management support and advocacy. Ali’s research interests include further characterizing the clinical spectrum of “orphan” diseases and the psychosocial impact of genetic testing, genetic counseling, and hereditary disorders.