LI-FRAUMENI SYNDROME

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

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Learn from our blog contributors. Personal stories, latest research, and mutant humor!

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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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SUPPORT GROUPS

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.

Facebook Posts

We often hear in the LFS support group- Listen to your gut, Trust your instincts. Lisanne explains what it is like living with Li-Fraumeni Syndrome, advocating for herself and her daughter. A very important part: Listening to your inner whispering voice. youtu.be/p9g2IU8ByGYThis talk was given at a local TEDx event, produced independently of the TED Conferences. Lisanne has got a challenging set of lemons. She leads her life wit... ... See MoreSee Less

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2 days ago

Living LFS - Li-Fraumeni Syndrome

San Diego Living LFS members, friends and family of all ages, we're having a regional meetup! Join us tomorrow at 6pm for an evening beach picnic in La Jolla! ... See MoreSee Less

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2 days ago

Living LFS - Li-Fraumeni Syndrome

Calling all San Diego mutants, family, and friends of all ages! Join us for an evening picnic at Windansea Beach in La Jolla from 6pm until whenever for fun and laughs!

Bring food and drinks for your tribe, and some to share if you're able! (Sorry, no alcohol or glass on the beach!) Don't forget beach chairs, towels and/or blankets to sit on, and a sweater just in case...

Let's meet at the corner of Neptune and Westbourne and find our perfect picnic spot from there: goo.gl/maps/8eRyUYEjEKK2

Street parking is available, or there are a few parking spaces on Neptune between Nautilus and Bonair Streets:
goo.gl/maps/vZgzo3RwR632

For those interested, perhaps adult beverages at The Shack Bar and Grill afterwards?
goo.gl/maps/W7pRHCd6NVw

Contact Andi Last if you need more info- can't wait to see you there! ... See MoreSee Less

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Latest Blog Posts

One Year ago today, we lost a good friend. D’Ana Reed would poke in on the Facebook support group, but she preferred to be with people. She would pack Lola, her trusty blow up mattress in the back of her car and head out to support friends, family and mutants in need. Where Gabby landed was sure to be a good time, complete with karaoke, disco balls and dramatic readings of books, usually with an accent. When her metastatic breast … read more

Living with LFS has many challenges, stresses, and choices. We do not get to choose our DNA or IF we will get cancer. We can choose whether or not to screen or make lifestyle choices that affect our health. In a recent perspective article in the New England Journal of Medicine,¬†Shekinah N.C. Elmore, M.D. shares her experience with LFS as a patient, medical student and doctor. Most importantly, Dr. Elmore discusses the devastation, the emotional aspects of learning to live … read more