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
Li-Fraumeni syndrome (LFS) is a genetic disorder linked to mutations in the p53 tumor suppressor gene, leading to a wide range of cancers. While p53 mutations help explain some cancer risks, they don't fully account for the complex patterns seen in LFS. Recent research has found other genetic factors, like polymorphisms and telomere changes, that
Researchers analyzed families with a pattern of sarcomas, breast cancer, and other cancers occurring in young patients. They found that cancer developed in an autosomal dominant pattern, with 79% of affected individuals diagnosed before age 45. These families also had higher rates of brain tumors, leukemia, and adrenocortical carcinoma. The variety of cancers suggests unique
Researchers tested cells from people with Li-Fraumeni Syndrome (LFS), a genetic condition that increases cancer risk, to see how they respond to DNA-damaging agents like X-rays. They found no significant differences between the cells of affected individuals and those of unaffected relatives or controls, suggesting this method might not be useful for identifying at-risk
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
I discovered the diagnosis before cancer. I had cancer twice, first in 2018 with a retroperitoneal leiomyosarcoma and in 2021 with HER2-positive and hormone-positive breast cancer. On my father's side, my family has always had a long history of cancer, and at very young ages. So, there was always a suspicion that it could be
I discovered the syndrome in 2018 after breast cancer. My breast surgeon, after reviewing my medical history, suggested I see a geneticist, and that's how I confirmed it. The first cancer was in 2003 when I was 16 years old: an osteosarcoma in the left iliac bone, which was removed through amputation. 2010: sarcoma in
My name is Marina, I am 43 years old and I discovered I have the syndrome in 2019 after my mother's passing at the age of 65 from pancreatic cancer. After her third cancer diagnosis, she underwent genetic profiling and found out she had the syndrome. Due to her diagnosis, I underwent testing, which confirmed
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