A Message from the LFSA President
Dear Friends of LFS Association,
The LFS Association embodies Power of Purpose.
Thirteen years ago, LFSA was formed to fulfill a powerful purpose: to advocate, support, and inform families and individuals with LFS. As a founder of LFSA, I am delighted to share with you that we have expanded our purpose to also champion youth and young adults with LFS, advance lifesaving LFS research, and bolster awareness of the critical benefits of genetic testing and early detection cancer screening.
At the heart of our expanded efforts is the LFSA International Youth Workshop, which brings together young adults to ensure they know they are not alone. This year’s Youth Workshop inspired beyond all expectations! It was our fourth Youth Workshop—and our third in-person event—since the inaugural 2017 workshop at The Huntsman Cancer Institute. This August, 23 young people gathered at the renowned Memorial Sloan Kettering Cancer Center in New York City for the largest and most diverse Youth Workshop to date. About half of our young people had not attended an LFSA Youth Workshop in the past. We were deeply moved to witness their eagerness to learn, and we were profoundly inspired by their spirit of hope. Our veteran attendees rekindled old friendships, and all participants were engaged in sharing their LFS experiences with new friends.
The relationships forged at the Youth Workshop are indispensable. They are essential not only for young people but also for their parents and other members of their family. When we conceived of the Youth Workshop, it was our hope to spur connections that were kindred and meaningful, but we had not anticipated that the Youth Workshop would lead so many of our young people into professions that directly address LFS and benefit the community. Our LFSA young adults are studying to be biologists, physicians, genetic counselors, and even cancer researchers. It is simply awesome!
Scientific research is fast advancing. You will read more here explained by Robert Lufkin, DO, LFSA’s Scientific and Medical Director, and Sean Downing, PhD, LFSA’s Scientific Advisor.
We’re currently learning the outcome of a breast cancer study that was made possible in part by an LFSA Research Grant. We’re also involved with another study to establish a TP53 biobank to study LFS through the Abramson Cancer Center at Penn Medicine. Science, especially research related to p53, is moving fast, but I know you will agree there is much more to be done. For those of us who have LFS, the science and clinical applications can’t come fast enough.
As the research progresses, we are also working to advance early detection screening and genetic testing. You may have noticed we recently tweaked our awareness campaign to include the word “hereditary” — Put Hereditary Cancer To The Test. We also refined our descriptor to reflect this: “Dedicated to a world without inherited cancer.” In part, this is to emphasize that the work we are joining together to do is benefiting the field of cancer beyond LFS and in particular, it is advancing knowledge about the many other forms of inherited cancer.
Our purpose remains powerful. I know you, like me, are determined to put an end to our kids and our family members being diagnosed with cancer. My most fervent desire is that one day LFS will be treated as a chronic condition.
What gives me HOPE is that you join us in this shared purpose. You are the driver of our purpose. You are the heart of our purpose. You are the engine of our purpose. Your volunteer contributions, fundraising, donations, research, and even your tears, are the power behind what we do every day. They are
Thank you for helping advance LFSA’s work and for your fierce support of our families. You are our power!
With my deepest gratitude,
LFSA President, LFS patient and LFS mom