Blog
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
Media Stories from the Li-Fraumeni Syndrome Community (Part 2)
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
Li-Fraumeni Syndrome Hardship Grants 2021
$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
A Breast Cancer Journey of 8 Years
By Ilonka Dee – Between March 2012 and March 2020, I underwent chemotherapy 3 times with in total 26 chemo rounds. Radiotherapy twice; 53 sessions,
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
Media Stories from the Li-Fraumeni Syndrome Community (Part 1)
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
Key Rare Cancer Syndrome Gets An Awareness Day and Month
The genetic mutation that causes Li-Fraumeni syndrome has the potential to unlock cancer FOR IMMEDIATE RELEASE: February 5, 2021 East Coast: Greg Harper President, Living
Getting a Li-Fraumeni Syndrome Diagnosis
by Andi Last Recently, ABC Television’s The Good Doctor featured a woman receiving the news that she has LFS: “It’s called Li-Fraumeni syndrome, LFS. An
How the Elephant Became a Symbol of Hope for Our Living LFS Community
Support LFS Hardship Grants by ordering an LFS Awareness Day Elephant Shirt! But… why elephants? The TP53 gene is a tumor-suppressor gene, often called “the
LiFT UP! Li-Fraumeni & TP53: Understanding & Progress 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 &
The New LivingLFS.org
For those of you who are new, welcome, we are so happy you’ve joined us! For those who have been with us, we’re so glad
Mental health is dope y'all
by Fannie Lemay – When I was diagnosed with Li-Fraumeni syndrome in 2016 and then three weeks later with stage 3 brain cancer, I felt
