Another survey opportunity: Risk-reducing mastectomy decision making process for adolescents and young adults with Li-Fraumeni Syndrome
Another invitation to participate in a study about the risk-reducing mastectomy decision making process for adolescents and young adults with Li-Fraumeni
Jenn Perry on WEEI for Jimmy Fund Telethon
LFSA founder Jenn Perry shares her family's LFS story and what motivates her to advocate for research and advancements to support those
2011: Monograph on Li-Fraumeni Syndrome by David Malkin
Li-Fraumeni syndrome (LFS) is a genetic disorder linked to mutations in the p53 tumor suppressor gene, leading to a wide range of
Anna Carolina
I discovered that I have Li-Fraumeni syndrome in 2021. At the time, my mastologist asked me for a genetic
Maria Regina
I was diagnosed with Li-Fraumeni syndrome after a severe and very rare pancreatic cancer. I was referred to an oncogeneticist,
William
My late son, Raphael Lee, was first diagnosed with rhabdomyosarcoma on his left forearm in 2008 when he was
Camila
In December 2022, my mother was diagnosed with retroperitoneal leiomyosarcoma after experiencing severe abdominal pain. This led to the
Cancer’s Financial Impact on Young Adults – includes Financial Resources & Useful Tips
The American Association of Cancer Research (AACR) has published a useful article on the financial impact of young adults who have been diagnosed with cancer
Another survey opportunity: Risk-reducing mastectomy decision making process for adolescents and young adults with Li-Fraumeni Syndrome
Another invitation to participate in a study about the risk-reducing mastectomy decision making process for adolescents and
Jenn Perry on WEEI for Jimmy Fund Telethon
LFSA founder Jenn Perry shares her family's LFS story and what motivates her to advocate for research
2011: Monograph on Li-Fraumeni Syndrome by David Malkin
Li-Fraumeni syndrome (LFS) is a genetic disorder linked to mutations in the p53 tumor suppressor gene, leading to
Butterfly Kisses and Wishes on Wings- When someone you love has cancer…a hopeful. helpful book for kids (ages 4-8)
From Amazon: Butterfly Kisses and Wishes on Wings, an award-winning children's book, is a powerful listen-to/read-aloud story for children with a family member or friend
The psychosocial effects of the Li-Fraumeni Education and Early Detection (LEAD) program on individuals with Li-Fraumeni syndrome
Data analysis indicated that the perceived benefits of screening included early detection, increased peace of mind, centralized care, empowerment through knowledge, and a sense that
Cancer Hates Kisses
From Amazon: Mothers are superheroes when they're battling cancer, and this empowering picture book gives them an honest yet spirited way to share the difficult
Genetic Counselor Recommendations for Cancer Predisposition Evaluation and Surveillance in the Pediatric Oncology Patient
Published by AACR in 2017, this publication was written by some of the invaluable members of LFSA's Genetic Counseling Advisory Group. In this article,
Let There Be Light (2017)
Let There Be Light is a 2017 faith-based film about an atheist (Kevin Sorbo) who, after a serious car accident, "sees the light," and is prompted
p53: The Gene that Cracked the Cancer Code
From Amazon: The story of the search for p53--the most important gene in medicine. All of us have lurking in our DNA a most remarkable
