Jenn Perry grew up surrounded by cancer. She lost her mother to breast cancer, and she and her younger sister later also developed breast cancer. At age 42, she received a genetic diagnosis that explained the pattern of cancer in her family: Li-Fraumeni syndrome. In 2010, shortly after her diagnosis, Jenn attended the first Li-Fraumeni conference, which brought together both Li-Fraumeni patients and researchers. Today, Jenn is President and Co-Founder of the Li-Fraumeni Syndrome Association, which provides support services for patients while also raising funds for research.


Story Reference Points:

What is Li-Fraumeni syndrome? @ 1:56

Jenn’s path to a diagnosis of LFS and her experience with genetic counseling @ 2:54

Medical management of LFS, body awareness, and parenting children with LFS @ 13:37

The first LFS conference in 2010 and the founding of the Li-Fraumeni Syndrome Association @ 18:40

LFSA activities, resources and recent launch of Youth Programs @ 21:45

Jenn’s advice to those contemplating hereditary cancer testing @ 42:22





The Li-Fraumeni Syndrome Association

LFSA on Twitter: @LFSAssociation

LFSA on Facebook

LFSA on LinkedIn
Reach out to LFSA for support

Donate to LFSA

LFS on NORD


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