As we prepare to ring in 2023, we here at Living LFS want to take a moment to look back with you and celebrate all that we achieved together for the Li-Fraumeni syndrome community in 2022:
- Connected 41 LFS families in need to $41,000 in LFS Hardship Grants
- Brought together 104 attendees and presenters for Living LFS' 2022 Jennifer Mallory Family Camp
- While at family camp, 32 participants with LFS donated blood samples to the National Cancer Institute for EDISYN's floating tumor DNA study
- Fully sponsored the creation of the EDISYN.org website
- Established a new partnership with Melodic Caring Project to provide music therapy to those in need in the LFS community. Learn more about MCP in our interview with Executive Director Levi Ware
- Created a monthly series of online gatherings for the LFS community:
- Our first gathering on Zoom in November 2022 was a mental health check-in to talk all things LFS, led by board member Catherine Wilsnack, LMSW
- In December 2022 we held a fun Live Music + Game Night! Melodic Caring's Levi Ware and Rockologist and music therapist Katie Conder played and sang on-the-spot music requests, after which Catherine Wilsnack led participants in a hilarious game of Jeopardy! for all-ages.
- Subscribe to our mailing list to be notified of future online monthly gatherings!
- Living LFS board member Catherine Wilsnack, LMSW authored or co-authored papers on Li-Fraumeni syndrome, and Catherine and fellow Living LFS board member and Medical Advisory Chair Jaclyn Schienda, SCM, CGC spoke on LFS, led discussion groups, and represented Living LFS at numerous conferences and events throughout the year, such as the LFS Symposium held at the National Institutes of Health in October
- Supported nearly 2,000 total active members in 950 total posts in the private LFS Support Group and LFS Family & Friends Support Group on Facebook
- Achieved platinum transparency level at GuideStar
- Achieved 100% 4-star charity at Charity Navigator
Let's Finish 2022 Strong!
With your help to meet our fundraising goal, in 2023 Living LFS will be able to provide even more Hardship Grants for LFS families in need, more opportunities for the LFS community to come together, and more ways to fulfill our mission to encourage, empower, and educate those living with Li-Fraumeni syndrome by connecting them with care, resources, and others who are Living LFS.
Your support makes all of our work for the LFS community possible. Thank you!
From Living LFS' all-volunteer Board of Directors, we wish you a happy, healthy, and peaceful 2023!