LI-FRAUMENI SYNDROME

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

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COMMUNITY

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

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Our private Living LFS Li-Fraumeni Syndrome Support Group at www.facebook.com/groups/90503981891continues to grow! For a syndrome that is constantly said to be so rare we are up to over 800 members strong! LFS is hard but you are not alone!

The admins for the group try to connect with people before we allow them into the group. Sometimes these Facebook messages get caught up and people don’t see them. If you or someone you know has sent a request and not heard from us, please check Facebook Messages - specifically "connection requests" or "message requests" - see the attached screenshots for what to look for on desktop and mobile. If yours looks any different please screenshot and leave it in the comments to help others!

We usually allow someone to be in the group if they have LFS or they are a caregiver for someone with LFS. We do this to keep the group a safe place to talk to each other and share things with people who are living with LFS and "get it." The link again is www.facebook.com/groups/90503981891 Please feel free to share!

The Living LFS "Li-Fraumeni Syndrome Family and Friends Support Group" is a great place for those close to us but not immediately living with LFS. For those that want to help, please direct them there! The link to that group is here: www.facebook.com/groups/674596832586102
Again, please share!

At Living LFS we strive to encourage, empower, and educate those living with Li-Fraumeni Syndrome by connecting you with care, resources, and others who are Living LFS. YOU make up a huge part of that and we are incredibly thankful for YOU! ... See MoreSee Less

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30 Days of Thankful. We are Thankful for help! Sometimes it’s a meal brought by a friend, someone who sits with you at treatment or with your child so you can shower for the first time in 4 days. Sometimes it’s just a text or call to let someone know you are thinking of them. LFS families get used to managing the impossible, but we are impossibly grateful for help we receive. Read more about the LFS Family: www.livinglfs.org/the-lfs-family/ ... See MoreSee Less

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30 Days of Thankful. We are Thankful for being able to give support and help to others. Sometimes it’s just sharing an experience so someone feels less alone or something that helped you get through. ... See MoreSee Less

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Latest Blog Posts

Our private Living LFS Li-Fraumeni Syndrome Support Group continues to grow! For a syndrome that is constantly said to be so rare we are up to over 800 members strong! LFS is hard but you are not alone! The admins for the group try to connect with people before we allow them into the group. Sometimes these Facebook messages get caught up and people don’t see them. If you or someone you know has sent a request and not heard … read more

by Andi Last  –  Sean Hannity and Hercules have made Travis Tritt the first person to ever say the words “Li-Fraumeni Syndrome” in a major motion picture. Back in 2014, LFS was used in a plot line on the TV show, Grey’s Anatomy. Ann Ramer recapped the episode here. For a condition as rare as ours, this was a big deal in the LFS community. On October 27, 2017, Let There Be Light was released in movie theaters across the country, … read more