A Message from the LFSA President
Dear Friends of the Li-Fraumeni Syndrome Association,
Without a doubt, 2020 has been an extremely challenging year. A pandemic, social and political unrest, catastrophic wildfires and floods, economic hardship…even giant hornets. It was one of those “what next?” kind of years.
Yet, despite the challenges and even because of them, the LFS Association pivoted, grew, and evolved with unwavering focus on its mission to support and advocate for individuals and families with Li-Fraumeni syndrome. In this year’s Impact Report, we recognize the silver linings of 2020, and we celebrate the resilience, resolve, and results of our LFS community.
• RESILIENCE to bounce back after setbacks
• RESOLVE to stay focused on our mission
• RESULTS of connecting our LFS medical, scientific, and patient community like never before
Yes, the COVID-19 pandemic forced us to cancel the in-person events we had planned this year. Silver lining? We moved the LFSA’s Youth Conference and the 5th International LFS Association Symposium to an online format. This move allowed us to reach more people than ever before and connected LFS doctors, scientists, genetic counselors, and patients around the world in a whole new way.
In another 2020 silver lining, the LFSA is one of 30 organizations to be awarded the Chan Zuckerberg Initiative (CZI) grant for the association’s patient-led approach to supporting community members and financing research for rare diseases. We are so grateful not only for the timing and funding of the CZI grant, but also for the education and training they have provided to help LFSA grow as an organization and develop new initiatives to support our LFS community.
And grow we did! With the addition of our newest chapter in India, LFSA now has chapters in 10 different countries. Having an active international presence allows us to support and learn from one another to advance LFS research and treatment.
With all the craziness of 2020, we had every excuse to slow down or put a hold on starting anything new until the crazy eased. But we didn’t. In fact, the LFS Association likely had its busiest year yet with new initiatives like the Scientific Advisory Board, new grant program, expanded Youth Program, and targeted webinars to answer timely questions, ease fears and build community. We didn’t stop because Li-Fraumeni syndrome doesn’t stop.
We are resilient despite adversity. We have the resolve to make a better future for individuals and families with LFS. And, we achieve results. Join me in celebrating the silver linings of 2020.
– Jennifer Perry,
LFSA Association President