As a young girl, I was introduced to LFS in a room full of family, laughs, and love. My uncle proudly strutted through the living room in a pair of jeans with a handmade p53 patch on the back pocket. I didn't understand the acronym or the gravity of his fashion statement, but I did understand that whatever it meant - we were in this together (and we would joke about it!)
I was tested for LFS when I was in my early 20s as part of a Dana Farber Cancer Institute study and refused my results. I was young, (self-proclaimed) invincible and probably a little paranoid of our health care system in the 1990s. I went to the doctor annually and was quick to acknowledge aches and pains, so I figured "why bother" with the results. Several years after my trip to Dana Farber, my mother passed away from LFS and I watched generations of my family battle LFS. I was living in the San Francisco Bay Area and reached out to Nicki Chun and Dr. Kurian at Stanford University Medical Center for a consultation. After genetic counselling, I made the decision to be tested again - and tested negative. I was in shock. My mother, aunts, uncles, cousins, and children of cousins were almost all positive for the mutation. I was embarrassed. I wondered, "why me?" and didn't want to tell my family. I did tell my family - and they were quick to support me, make fun of me for always being the black sheep of the family and remind me that a negative test result didn't give me a "get out of cancer free card" in our society. Today my family continues to battle LFS with courage, unity, hope and laughter. I am a part of this family. I am Living LFS.
I never had the opportunity to talk to my mother about her legacy, but I have to think the work being done by Living LFS would have made her proud. I am honored to be a part of this organization and look forward to offering support, resources, and a few laughs to the LFS community.