LI-FRAUMENI SYNDROME

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

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Few things are more frustrating than when your genetic test results show a mutation, but science just doesn’t know yet if it's harmful or harmless. In the case of LFS, we don’t know if the mutation is associated with cancer. These are called Variants of Uncertain Significance (VUS), also known as Variants of Unknown Significance (still VUS), or Unclassified Variants. In this video, Wendy Kohlmann, MS, CGC, a licensed genetic counselor at The University of Utah Huntsman Cancer Institute, explains VUS - and how information is being gathered to help us learn more. Read further details on our blog: www.livinglfs.org/variants-of-uncertain-significance-vus-in-lfs/ ... See MoreSee Less

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A day in the life of a mutant. We didn’t choose our genes, but we can choose how we live despite the mutation!Thank you Snarky Cancer! ... See MoreSee Less

We hear this often as a family. But when you are faced with what seems like the impossible you suck it up and you deal. Yes there are days where you want to give up and run away. Those feelings are...

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The holidays can be bittersweet when living LFS. We are grateful for each day, each memory, but we also experience an unfair helping of loss. On December 16, 2016, the Quist family surrounded 13 year old Josh as he earned his angel wings after enduring months of treatment, multiple surgeries and a clinical trial for a Glioblastoma brain tumor. Outside on a tree in their yard, hung several angel ornaments, gifts from friends to let Josh and the entire Quist … read more

Few things are more frustrating than looking for answers and getting the response- we don’t know. Sometimes, a person agonizes over the decision to be tested for a hereditary cancer syndrome like LFS, finally getting tested just to know for sure. Unfortunately the results aren’t always a clear cut; Yes, you have LFS or No, you do not have LFS. There are thousands and thousands of changes that can occur to our DNA, called mutations. Not all mutations are harmful- … read more