Li-Fraumeni Syndrome (LFS) is linked to a mutation in the TP53 tumor suppressor gene.

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It's very difficult and sometimes lonely to face a rare syndrome. Meet the Living LFS community.

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Li-Fraumeni Syndrome Support Group

Click here to join a private Facebook support group specifically for those living with LFS. A place to share, ask questions and learn from the experiences of others who are just like you.

Li-Fraumeni Syndrome Family & Friends

Click here to join a private Facebook support group for family members and friends to learn how to support their loved ones who are living with LFS.

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Scanxiety is a huge part of living with LFS. Screening can help us catch cancer earlier, when it could be more successfully treated. Whole Body MRI is a non radioactive, non invasive way to screen- for adults and children at risk. A new book by Amy Peasgood helps kids use make believe to learn about LFS and MRIs. What do you like to imagine or what music do you listen to while in the MRI? Comment below to enter a chance to win a copy of Robot Music! ... See MoreSee Less

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Here’s to a new week, with new challenges and skills to get through. To celebrate our 5th Anniversary of Living LFS- like and share this post by midnight pacific time Monday to be put in a drawing to receive a magnet of the image below. 5 will be given out! ... See MoreSee Less

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Happy Birthday Living LFS! For 5 years, it’s been our honor to encourage, empower, educate, and connect families living with Li-Fraumeni Syndrome. 5 years ago, we incorporated, filed for nonprofit status and had high hopes of working with the LFS community to host a family camp! This October we will come together to fulfill make the dream become reality! ... See MoreSee Less

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Latest Blog Posts

by Fannie Lemay   I always loved to work. Even when I was cutting carrots at IGA for a living, I loved it. Well, maybe “love” is a strong word, but I still really enjoyed myself. I’m what you would call a power loner. In my personal life, I have few close friends and that’s how I like it. I’m an introvert; I’m not outgoing. But for some reason, it’s easier for me to connect with people when I’m at … read more

In 2002, I noticed a lump on the innerside of my upper left leg. The doctor thought of scar tissue caused by a mosquito bite, according to him nothing worrisome. I didn’t trust it and insisted on visiting a specialist. After some discussion he reluctantly issued a referral letter for the plastic surgeon. He clearly thought I was an instigator. The specialist cut out the lump and stitched me back up. After a week, I received a phone call from … read more