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
Dr. Payal Khincha, M.B.B.S., M.S.H.S., the inaugural Lasker Clinical Research Scholar in DCEG's Clinical Genetics Branch (CGB), whose expertise in diagnosing and managing Li-Fraumeni Syndrome (LFS) is reshaping the landscape of cancer prevention and management. Dr. Khincha leads pioneering research efforts aimed at developing innovative strategies to combat cancer in high-risk populations. As the principal
LFSA Medical Advisory Board Member Dr. David Malkin and his team at SickKids in Toronto continue to improve the lives of those with Li-Fraumeni syndrome! A recent article discusses a groundbreaking study led by researchers at SickKids Hospital, demonstrating the effectiveness of liquid biopsy in enhancing early cancer detection and diagnosis for patients with
In 2017, not only did Dr. Christian Kratz launch our international chapter, LFSA – Germany, but he also founded the German Cancer Predisposition Syndrome Registry based at Hannover Medical School, Hannover, Germany. The registry collects information on genotypes, personal medical details, family histories, and surveillance, as well as a range of biospecimens. In today’s
Dr. Maria Isabel Achatz led a recent publication on the cost-effectiveness of Cancer surveillance for patients with LFS in Brazil using the Toronto Protocol screening guidelines. Brazil has a higher prevalence of LFS compared to other countries, due to a founder mutation in the TP53 gene.
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