Presentations on advancements in early detection brought compelling research to light at the 7th International LFS Association Symposium. Trevor Pugh, PhD, FACMG, shared some early highlights from a randomized trial intended to assess the ability of cell-free DNA (cfDNA) sequencing to detect cancers in patients with LFS and similar cancer predisposition syndromes. Pugh is
The 7th International LFS Association Symposium delivered a powerful global collaboration intended to provide the best of care and hope to all of those with LFS and their families. In his talk on advancements in care, Michael J. Hall, MD, MS, FASCO, acknowledged how isolating it may be individuals receiving a diagnosis for LFS
A unique aspect of the LFSA International Symposium is the intersection of LFS families among globally renowned medical and scientific experts. Lisa J. States, MD, shared with CancerNetwork her insights and discussion take-aways around the goal of making whole body MRI scans less anxiety provoking for those with LFS. “We will work a
Another invitation to participate in a study about the risk-reducing mastectomy decision making process for adolescents and young adults with Li-Fraumeni Syndrome: A team of researchers at the Icahn School of Medicine at Mount Sinai are conducting a study to understand the factors that are most important to adolescents and young adults with Li-Fraumeni
LFSA founder Jenn Perry shares her family's LFS story and what motivates her to advocate for research and advancements to support those impacted by Li-Fraumeni syndrome. Jenn and her daughter Samantha were guests on WEEI's Gresh and Fauria show as part of the 2024 Jimmy Fund Radio - Telethon. They were helping to raise awareness
You are being invited to participate in a questionnaire study being run by Dana-Farber Cancer Institute. This study consists of a one-time questionnaire and is aimed at helping expand knowledge on breast cancer screening after mastectomy in women with Li-Fraumeni syndrome. You are eligible for this study if you: Are 18 years or older.
Watch our latest webinar: Navigating Hospital Financial Assistance, presented by Dollar For. Hosted by the LFS Association, this webinar covers the essential topic of navigating hospital financial assistance programs, also known as charity care, with insights from Dollar For, a national nonprofit organization dedicated to eliminating hospital bills by helping patients access hospital financial
Lawrence Ingrassia, author of A Fatal Inheritance: How a Family Misfortune Revealed a Deadly Medical Mystery, talks about the two-decades long journey by Dr. Joseph Fraumeni Jr. and Dr. Frederick Pei Li, to solve the medical mystery behind the cancer syndrome named after them; the journey of his family, and "Family A" in their
Larry Ingrassia’s, A Fatal Inheritance, is the most comprehensive biography of Li-Fraumeni syndrome for the lay reader to date. Though this book reads like a riveting medical mystery, it is also an informative resource for medical students and providers, genetic counselors, and families riddled with early onset, rare, and/or multiple cancers, and even the skeptics
The Huntsman Cancer Institute in Utah is studying attitudes pertaining to vaccines for primary cancer prevention in adolescents and young adults with cancer predisposition syndromes. If you would like to take part in this questionnaire-based research please follow the provided link below to the questionnaire web-page. This is a survey-based study that looks at personal
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