Contact Tom: Tom@LivingLFS.org
I first saw LFS mentioned in print on the front page of the WSJ in the summer of 1992. I am sure millions just glanced at the headline or read and forgot it, but in our family, we were painfully aware something was happening and maybe now it had a name. My father passed from a brain tumor in 1958. He was an only child, so it predicted very little.
Almost thirty years later, between 1986 and 1996, LFS returned. By the time I was diagnosed with my first cancer in 1992 I had lost a sister, another sister was struggling through multiple cancers, a sixteen- year-old nephew had passed, and a six year old nephew was struggling to survive. As I read about Dr. Li and Dr. Fraumeni, I was sure they were telling our story. Over the next four years, three more of my family would pass. Doctors still could look you in the eye and tell you the various cancers were not related, that there was no genetic link. There were no protocols for screening, nothing to do but wait. So, largely I put my LFS worries in a box on the shelf for over ten years.
That stopped working when LFS returned. My niece Jen Mallory found it first in her young family. She struggled with her daughter’s diagnosis and then her own. She was a founding member of this organization, and I was inspired by her efforts to help others despite her own challenges. I did not grasp fully what she and others were building at Living LFS until my daughter was diagnosed with her cancer and two beautiful grandchildren tested positive for LFS. Meanwhile, I was still checking new cancer boxes.
I came to appreciate and then need this caring group of mutants, who help each other in so many ways. When Jen passed, my focus on the group intensified and I am honored to serve now on the board and help in anyway I can, in honor of Jen, and also to give back. I am blessed with over 70 years despite multiple cancers and my LFS. I realize that is a privilege and one many more deserving never had.
My background includes various senior roles in pharmaceutical distribution and technology in two countries. I am hopeful some of those acquired experiences will help me contribute to our efforts to support each other.