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 Check out other Patient Stories podcast episodes. Read other Patient Stories on the Grey Genetics Patient Stories Page Do you want to support Patient Stories? You can now make a donation online! Want to support Patient Stories in a non-monetary way? Leave us a review on iTunes, or share your favorite episodes on Social Media. Patient Stories on Twitter: @GreyGeneticsPod Patient Stories on Instagram: @patientstoriespodcast Are you looking for genetic counseling? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment with a genetic counselor specialized in your area of concern. Choose from our growing Network of Genetic Counselors. All genetic counseling appointments take place over secure, HIPAA-compliant video-conferencing or by phone.