The Li-Fraumeni Syndrome Association (LFSA) is proud to announce that Co-Founder and Board Member Debbie Soprano has been recognized with the 2025 Employee Community Volunteer Award from Boston Children’s Hospital. The award honors Debbie's outstanding commitment to volunteerism through her work with LFSA, where she currently serves as Marketing and Development Chair. Soprano, who
Researchers at the Dana-Farber Cancer Institute concluded that annual whole-body MRIs contribute substantially to detection of asymptomatic localized cancers among individuals with Li-Fraumeni syndrome (LFS). Though interval cancers remain common, Dr. Asaf Maoz, the author of the study, stated that a whole-body MRI serves as a crucial test modality for individuals with LFS that should
Dana-Farber is leading an IRB-approved study that will screen for many of the deadliest cancers with a first-of-its-kind blood test. This test will predict the most likely origin of the cancer signal to help guide the next steps for diagnosis. Note that this will not detect all cancers, and false negatives and false positives
Just published by American Association for Cancer Research (AACR) is the updated version of the “Toronto Protocol,” the widely recognized screening recommendations for Li-Fraumeni syndrome patients, worldwide. Lead by Dr. David Malkin (LFSA Medical & Scientific Board Member and Co-chair of LFSA – Canada), this new perspective provides an up-to-date clinical overview of LFS
The two MHH researchers Lucas John Müntnich and Professor Christian Kratz refer to the cluster analysis of the study, according to which cancer-free survival depends on the classification of the underlying variant. Copyright: Karin Kaiser/MHH. (With permission.) A new form of cluster analysis enables the development of personalized cancer screening tests. As presented
UK researchers conducted a retrospective case-series study of four children diagnosed with solid cancers at age 16 or younger, aiming to assess the time to and survival following a second cancer diagnosis. In those who received radiotherapy for the initial cancer, the median time to a second primary cancer diagnosis was 13.3 years, with a
High resolution clustering of TP53 variants into functional classes correlates with cancer risk among germline variant carriers and identifies different phenotypes of the Li-Fraumeni Syndrome. Emilie Montellier, PhD (1), Nathanaël Lemonnier, PhD (1), Judith Penkert, MD (2), Claire Freycon, MD (1,3,4), Sandrine Blanchet, MSc (1), Amina Amadou, PhD (1,5), Florent Chuffart, PhD (1), Nicholas Fischer,
In October 2016, the American Association for Cancer Research organized a meeting with international experts on Li-Fraumeni Syndrome (LFS) to review the current understanding of the condition and propose consensus guidelines for surveillance. This summary provides an overview of the clinical and genetic aspects of this aggressive cancer predisposition syndrome. The expert panel concluded that
We invite you to participate in a survey about your experiences receiving cancer screening for Li-Fraumeni Syndrome (LFS), and your thoughts about an upcoming clinical trial for people with LFS.Liquid biopsy is a promising new cancer screening technique that can detect signs of cancer in a blood sample, and researchers are planning a study adding
Northwestern University is conducting a groundbreaking study focused on understanding patient perspectives on dating and disclosure to romantic partners for males diagnosed with Li-Fraumeni syndrome (LFS). Who are they looking for? Men aged 18–40 with a diagnosis of LFS All perspectives are welcome, including those who are single, dating, married, straight, or
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