

The 2025 LFS Association Youth Workshop, hosted by Dana-Farber Cancer Institute and Boston Children’s Hospital, brought together 25 youth and their families from around the world for a powerful weekend of connection, learning, and inspiration.
The weekend kicked off on Friday, giving the youth participants the opportunity to connect in a fun and informal setting. They embarked on a Boston Harbor cruise aboard the Northern Lights Yacht, followed by a visit to Mei Mei Dumplings in South Boston, where they were warmly welcomed by Elaine Shiang and her daughter, Chef Irene Li, the wife and daughter of the late Dr. Frederick Li, co-discoverer of Li-Fraumeni syndrome. The youth rolled up their sleeves for a dumpling-making class and shared a delicious meal together.
Saturday’s full-day workshop at Dana-Farber began with a special welcome from Jenn Perry, LFSA President, and an engaging agenda filled with expert presentations, interactive sessions, and supportive discussions. Highlights included:
- Updated Screening Recommendations with Dr. Junne Kamihara
- Living with LFS and Your Options with Dr. Judy Garber
- Special Guest Remarks about Dr. Fred Li’s Life & Achievements by Dr. Elaine Shiang
- Research Updates – Honoring the work of the late Dr. Pierre Hainaut from Keynote Speaker Professor Arnold Levine, co-discoverer of TP53
- Science is Fun! with Hertz Fellow David Hoyos and Camryn Neches
- Fun with DNA (Youth Only) with genetic counselors Megan Frone, Kristin Zelley, Corinne Echmalian, and Jackie Schienda
- Managing Transition (Parents Only) with Dr. Brandy DeRosa and Kathy Schneider, DFCI Senior Genetic Counselor
- Lab Science (Youth Only) in Dr. Kornelia Polyak’s lab at DFCI, paired with hands-on strawberry DNA extraction
- AYA Transition Toolkit Development with Dr. Brandy DeRosa and GCs Megan Frone and Kristin Zelley
- Interactive Panel Discussion and Q&A with medical professionals
- Staying Connected and Involved with Jenn Perry
The day also included special breakout groups for young men and women, parent networking time with professionals, and plenty of opportunities for fun including an ice cream break, a Boston Police K9 demonstration, and a rooftop dinner overlooking the city skyline to close the evening.
This year’s Youth Workshop was a remarkable opportunity for young people with LFS and their families to learn, share, and build lasting connections, while honoring past and present achievements in the science of LFS and celebrating the next generation of resilience and discovery.
A Special Thanks to Our Sponsors












