Living LFS is a member of the Coalition Against Childhood Cancer (CAC2), a collaborative network of organizations and individuals supporting and servicing the childhood cancer community. CAC2 effectively advances a variety of childhood cancer causes by unifying the childhood cancer community through broad-based coordinated action and collaboration that leverages the strengths and expertise of its individual members and minimizes duplication of effort. The primary values underlying CAC2 are to put the children and their families first in everything we do and to support organizations active in the fight against childhood cancer.
What if we could find cancer sooner? Living LFS is a proud member of the EDISYN Consortium (EDISYN: Early Detection in SYNdromic Cancers), which was established to identify new ways to detect cancer in patients with Li-Fraumeni syndrome and other cancer predisposition syndromes before tumors are large enough to cause symptoms or be detected by imaging. In support of this work, Living LFS fully funded the creation of the EDISYN website, and kick started EDISYN’s work by offering nearly 30 attendees of the 2019 Living LFS Family Camp, members the Living LFS community who have a TP53 mutation, the opportunity to participate in an EDISYN study in which LFS patients donate blood and are monitored over time. Over 30 attendees of the 2022 Living LFS Family Camp also donated blood and enrolled in the study. Living LFS is proud to further EDISYN’s efforts to find cancer sooner for the LFS community. Watch Dr. Luke Maese’s presentation at the 2022 Living LFS Family Camp.
Living LFS is a PROUD Member of the Global Genes Rare Foundation Alliance, a coalition of more than 600 rare disease organizations that believe in the power of collective impact and understand that together, we are more powerful. Foundation Alliance partners collaborate and exchange best practices to drive better outcomes for the rare disease community.
Are you a cancer fighter, survivor or caregiver looking for one–on–one support? Living LFS is pleased to partner with Imerman Angels, matching individuals with Mentor Angels for the chance to ask personal questions and receive support from someone who is uniquely familiar with the experience. Learn more about our partnership, and become a Mentor Angel.
Melodic Caring Project provides ongoing mental, emotional and spiritual support to patients and others battling illness by connecting patients with musicians, Broadway performers, celebrities, and their team of Rockologists, offering a range of programs including music therapy, personalized live-stream performances, weekly support group sessions and specialty programs. Learn more about our partnership, and sign up for music therapy support.