Sponsor an LFS teen and their guardian at the 2019 Youth Workshop in Boston, MA.
Our inaugural pilot program, first held in 2017, was hosted at the Huntsman Cancer Institute and was a terrific experience for the 21 teens with LFS who traveled in from around the world! The friendships that developed, not only between the teens, but also amongst the parents, have proven to be treasured relationships since our first workshop.
This year’s workshop will be hosted by Dana-Farber Cancer Institute and Children’s Hospital in Boston, Massachusetts, and we are very excited to again plan this opportunity to our teens between 13-19 years old with LFS. The weekend kicks off on Friday afternoon in downtown Boston and concludes with breakfast on Sunday morning. The weekend promised to be packed with fun events, activities, and special presentations for both teens and their guardians.
The Li-Fraumeni Syndrome Association (LFSA) supports families and individuals with LFS in ways that touch lives and inspire change. LFS is a rare genetic disorder that greatly increases one’s risk of developing cancer. Our efforts concentrate on raising awareness in the community, advancing medical and scientific research, and uniting patients and professionals who share our same goal.
We provide extensive resources, educational materials, forums, community events, and support services for those living with LFS and their loved ones. Our advocacy also extends to medical providers and thought leaders in furthering research and promoting optimal care for the LFS community. We are proud to work with respected physicians, genetic counselors and medical facilities to truly make a difference.
We are a community of Li-Fraumeni syndrome families and survivors. We are the building blocks of a future without LFS. Together we will bridge the gap between patients and medical professionals, changing lives and turning the tables for those impacted by LFS.