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LFS Association

About LFS Association

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So far LFS Association has created 20 blog entries.


My late son, Raphael Lee, was first diagnosed with rhabdomyosarcoma on his left forearm in 2008 when he was 8 months old. He underwent one round of chemotherapy before surgery to shrink the tumour. After surgery, he had to go for radiotherapy and another round of chemotherapy to eliminate any remaining tumour cells. In

By |2024-07-11T15:16:32-04:00May 9th, 2024|LFS Family Stories|Comments Off on William


In December 2022, my mother was diagnosed with retroperitoneal leiomyosarcoma after experiencing severe abdominal pain. This led to the discovery of a hereditary cancer syndrome in our family. My cousin had been diagnosed with the syndrome in 2018, thought to be inherited from her mother's side. However, it was a shock to find out

By |2024-07-11T15:16:33-04:00May 9th, 2024|LFS Family Stories|Comments Off on Camila

New survey – vaccines for primary cancer prevention in adolescents & young adults

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

By |2024-07-11T15:16:33-04:00January 30th, 2024|LFS News|0 Comments

Congratulations to NCI’s Dr. Payal Kincha, co-chair of LFSA – India!

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

By |2024-07-11T15:16:33-04:00November 8th, 2023|LFS News|0 Comments

Liquid biopsy improves early cancer detection and diagnosis in patients with LFS

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

By |2024-07-11T15:16:33-04:00October 26th, 2023|LFS News|0 Comments


Long before we had ever heard of Li-Fraumeni syndrome, cancer was cutting a swath of destruction across the generations of my family. When my father died of a brain tumor at 37 years of age in 1966 everyone agreed it was tragic, but no one had any real answers as to how such a thing

By |2024-07-11T15:16:33-04:00April 27th, 2023|LFS Family Stories|Comments Off on Jamie

Elenore & Aaron

Li-Fraumeni Syndrome (LFS) impacted our family in an unexpected way. At the young age of 35, my husband’s sister was diagnosed with breast cancer. Due to a family history of cancer, her oncologist suggested testing for LFS, a hereditary syndrome that predisposes people to multiple cancers. In 2020, we found out she had LFS and

By |2024-07-11T15:16:54-04:00April 27th, 2023|LFS Family Stories|Comments Off on Elenore & Aaron
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