At Living LFS, we encourage, empower, and educate those living with Li-Fraumeni Syndrome by connecting them with care, resources, and others who are Living LFS.
An LFS diagnosis is both devastating in its impact and isolating in its rarity. It is our mission to reduce the burden that LFS puts on patients and family members.
We reduce this burden by funneling support into our Facebook group, which is now over 1,500 patients and caregivers strong. In 2019, we held our first annual Living LFS Family camp where we connected families to genetic counselors, psychologists, researchers and, most importantly, to each other. Camp attendees were also able to donate blood samples to a research program developed by the EDISYN Consortium. This consortium, which Living LFS is a part of, focuses on developing a cancer surveillance method and includes researchers from Huntsman Cancer Institute, Boston Children’s Hospital, Dana Farber Cancer Institute, National Cancer Institute, Children’s Hospital of Philadelphia, University of Pennsylvania, Texas Children’s, and Children’s Minnesota.
Every dollar raised by Living LFS goes right back the community to try to reduce the burden placed on LFS families. We have an amazing community of patients, families, genetic counselors, researchers, and support teams that we at Living LFS are proud to call our family. Thank you so much for your support!
With much love,
Your friends at Living LFS