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 2022, we held our second Living LFS Jennifer Mallory Family Camp where we connected families to genetic counselors, psychologists, researchers, and, most importantly, to each other. Camp attendees also donated 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.
Living LFS is proud to have funded the website EDISYN.org to help connect families to research studies that will help reduce the cancer surveillance burden.
Since 2021 we have provided over $77,000 in LFS Hardship Grants to LFS families in need of assistance paying for cancer screening and treatment.
Every dollar raised by Living LFS goes right back the community 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