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A rare pediatric tumor of the adrenal gland is often linked to LFS. Children who are diagnosed with this tumor should be referred to genetic counselors.
Should children be tested for LFS and when? It's a very personal decision and a very tough one for a parent to decide. The right answer is the right one for your family. There are more screening options now that are showing survival benefits and catching cancers earlier and at treatable stages. With the prevalence of childhood cancers in LFS, it can be very helpful to know genetic risk to help make some screening decisions easier. Here are some thoughts from parents who have been there. www.livinglfs.org/mutant-thoughts-on-genetic-testing-for-lfs/
Our littlest warriors are often the most resilient and can teach us so much about happiness even during the toughest times. But wouldn't it be nice if they didn't have to? #childhoodcancerawareness
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D’Ana and her sister Courtney helped found Living LFS. They soon became our mutant sisters as we worked to bring those living LFS together. D’Ana lived fully and completely and shared her positive energy and laughter with anyone she ran across from childhood friends, to chemosabes(chemo friends) to her mutant family. The way D’Ana lived is very much the foundation of Living LFS and refected in our core values: Community, Compassion, Respect, Integrity and Levity. D’Ana had brilliant ideas … read more
Fannie learned some very powerful lessons from her mother through her breast cancer battles. She learned about self awareness, how to advocate and how she chooses to live despite living with LFS. Thank you Fannie for sharing your memories of your mother and her strength with us. My mom never knew she had Li-Fraumeni Syndrome. I was the first one to get genetic testing done. My mom died of breast cancer when I was 21 years old; she was … read more