Dear LFS Family, We need your input on a new children’s book about Li-Fraumeni syndrome! Providers, please forward this opportunity along to your families with young children. The LFSA Genetic Counseling Advisory Group created a children’s book about LFS and need to know what you and your child think! We have an electronic copy
To all our LFSA members, We are pleased to share an international study with you called LiFT UP (Li-Fraumeni & TP53: Understanding & Progress). Anyone who has a TP53 mutation and their family members are eligible to join. This study will help clinicians and patients understand more about TP53 and Li-Fraumeni syndrome. Download the LiFT
Do you want to know how COVID-19 impacts the health of people with Li-Fraumeni syndrome? Help doctors find out by taking a 30-minute survey. Learn more!
Hello, My name is Colin Bixler and I am a student in the Master’s in Genetic Counseling program at the University of Maryland School of Medicine. I would like to invite you to participate in a research study. The goal of this study is to evaluate coping strategies used by parents of children diagnosed with
A Message from the LFS Association Dear LFS Family, I wanted to personally reach out to you as the Coronavirus (COVID-19) continues to affect our lives around the globe. This virus (like many before it), is unbiased, it doesn’t play favorites, and impacts each one of us, no matter where we live, work or call
For Immediate Release Holliston, MA, February 4, 2020 – The Chan Zuckerberg Initiative (CZI) announced yesterday the Li-Fraumeni Syndrome Association (LFSA) as a recipient of a two-year grant to aid in their work with the Li-Fraumeni syndrome (LFS) community. The LFSA is one of thirty organizations to be awarded a grant for their patient-led approach
My name is Emily Berenson and I am a genetic counseling student interested in the psychosocial/emotional impact of the currently recommended Li-Fraumeni syndrome (LFS) cancer/tumor surveillance on both those with a diagnosis of LFS and their family members. With the support of the Li-Fraumeni Syndrome Association, I am conducting an 10-15 minute online survey to
Help support our 2019 LFSA Youth Conference by buying a square for our upcoming Cow Pie Contest! You do not have to be present at the event to participate and enter for the chance to win. Buy your tickets here!
Now available!! “Robot Music: A Story for Kids with Li-Fraumeni Syndrome and other Cancer Predispositions.” Sponsored by your LFS Association, Amy Peasgood has co-written with her young daughter, Ruby, a book about Li-Fraumeni Syndrome designed for children aged 4-plus. Delightfully illustrated, it is a story is about a child navigating cancer risk and surveillance. The