Fall 2021 LFS Hardship Grants: from $10K to $13,530

Fall 2021 LFS Hardship Grants

“Losing my voice does not mean I won’t be heard.” – Jennifer Mallory Today, October 5, 2021, is one year since Living LFS founder Jennifer Mallory passed from metastatic breast cancer. We all miss Jen and her presence deeply. Every day. Jen’s passion and her goal was helping others to live with Li-Fraumeni syndrome.  By […]

Rare Disease Week 2021

Treva Vetter at Rare Disease Week 2021

Treva Vetter is a Registered Nurse, survivor, and patient advocate who is living with Li-Fraumeni Syndrome. Treva represented Living LFS during the Virtual Rare Disease Week on Capitol Hill, July 14-22. Treva advocated for the LFS community to staffers for her members of Congress including Senator Patty Murray, Senator Maria Cantwell, and Representative Adam Smith. […]

Media Stories from the Li-Fraumeni Syndrome Community (Part 2)

Li-Fraumeni Syndrome: Jewel Kilcher Performs for the Thompson Family

Li-Fraumeni Syndrome may be rare, but the families and individuals whose lives have been affected by LFS have been featured in local, national, and international media on many occasions. See part 1 of this series here. If your LFS story has been featured in the media and you would like us to share it, please […]

Li-Fraumeni Syndrome Hardship Grants 2021

2021 LFS Hardship Grants

$36,320 in hardship grants awarded in 2021! Living with a genetic disease like Li-Fraumeni Syndrome (LFS) has devastating physical and emotional costs and losses. To add insult to injury, living with LFS can be prohibitively expensive financially, too. Regular surveillance and monitoring to detect cancer as early as possible and treatments should cancer happen, potentially […]

A Breast Cancer Journey of 8 Years

Ilonka's Breast Cancer Journey

By Ilonka Dee – Between March 2012 and March 2020, I underwent chemotherapy 3 times with in total 26 chemo rounds. Radiotherapy twice; 53 sessions, and an endless long list of many different medications. It seems I’ve lost count of the numerous times I’ve been on an operation table for breast cancer related stuff. My […]

Let’s talk about sex, baby

Fannie Lemay: Let's Talk About Sex, Baby

by Fannie Lemay – I was always lucky that way. I was never preoccupied by how I looked. I considered myself average looking and figured early on it was the best place to be. Pretty enough to get the dudes, but not pretty enough to get too much attention. I was always puzzled when hearing […]

Media Stories from the Li-Fraumeni Syndrome Community (Part 1)

Li-Fraumeni Syndrome: The Pleasant Family

Li-Fraumeni Syndrome may be rare, but the families and individuals whose lives have been affected by LFS have been featured in local, national, and international media on many occasions. To mark Li-Fraumeni Syndrome Awareness Month in March, we are sharing some of that media coverage. If your LFS story has been featured in the media […]

Key Rare Cancer Syndrome Gets An Awareness Day and Month

March 20th is Li-Fraumeni Syndrome Awareness Day and March is Li-Fraumeni Syndrome Awareness Month

The genetic mutation that causes Li-Fraumeni syndrome has the potential to unlock cancer FOR IMMEDIATE RELEASE: February 5, 2021 (download release as PDF) East Coast: Greg Harper President, Living LFS, Inc.1 (508) 525-5380greg@livinglfs.org West Coast:  Andi Last Vice President, Living LFS, Inc.1 (619) 292-8811andi@livinglfs.org Trishia Shelly-Stephens is living with Chronic Lymphocytic Leukemia, her fourth cancer, […]

How the Elephant Became a Symbol of Hope for Our Living LFS Community

The TP53 gene is a tumor-suppressor gene, often called “the guardian of the genome.” In this post, Living LFS member Ilonka Dee shares how research into elephants, with their plentiful copies of TP53, offer promise to those with Li-Fraumeni Syndrome. “Each of the cells in our body contains two functional TP53 alleles. Even with these […]

LiFT UP! Li-Fraumeni & TP53: Understanding & Progress Study

LiFT Up Study

Living LFS is working to promote research opportunities for our families with LFS. A new study that is currently enrolling is called the Li-Fraumeni & TP53: Understanding & Progress (LiFT UP) study. This study is funded by the National Institutes of Health/National Cancer Institute in collaboration with Dana-Farber Cancer Institute, City of Hope, and Baylor […]