Building a Community of Hope and Support around Li-Fraumeni syndrome

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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