LFSA Youth Workshop 2025: A legacy of science and support

The International LFSA Youth Workshop 2025 in Boston, Massachusetts, United States of America, last month marked another milestone for the Li-Fraumeni Syndrome Association (LFSA).

Dubbed the LFS Fifth Biannual Youth Workshop, it showcased and brought together stakeholders in the cancer awareness and advocacy ecosystem. Over three days, young people, families, and experts united in a unique blend of science, storytelling, and support that many described as the most impactful workshop yet. Li-Fraumeni Syndrome is a rare genetic condition first described in 1969 by Dr. Joseph Fraumeni and Dr. Frederick Li. It is caused by mutations in the TP53 gene, commonly known as the “guardian of the genome.”

The condition dramatically raises the risk of cancers such as sarcomas, breast cancer, brain tumors, and leukemia, frequently affecting children and young adults. Because of its hereditary nature, entire families can be impacted across generations—making community support essential. Researchers reveal that individuals with this condition have a 90 per cent chance of developing some type of cancer before reaching the age of 60. The event’s origins trace back to LFSA President Jenn Perry, who, after one of the Association’s early symposiums, realized that youth living with LFS needed a dedicated space of their own.

“I recognized an unmet need—the youth,” Perry explained. “From that moment, we knew we had to create a space just for them.” That spark led to what is now a cherished tradition: biennial youth workshops that balance rigorous science with community building.

Top Researchers and providers from left, Prof. Arnold Levine, Dr. Junne Kamihara, David Hoyos, Dr. Brandy DeRosa, Kristin Zelley and Dr. Asaf Maoz field questions from delegates attending the LFS Fifth biannual Youth Workshop in Boston Massachusetts last month.  This year’s gathering, held in August, drew 26 teens and young adults, including three sets of siblings who all live with LFS. Parents, though required only for participants under 18, attended in significant numbers, underscoring the importance of shared experience. A few close friends also joined, a reminder that awareness and support extend beyond immediate families. The program combined social bonding with leading-edge science. Day one opened with informal remarks by Perry, who welcomed families and introduced volunteers. Caley Kling, LFSA Youth Program Coordinator (USA), outlined the weekend ahead, encouraging youth to embrace the opportunity to meet peers and experts.

Later, participants set off on a Boston Harbor cruise, followed by a dumpling-making dinner at Mei Mei restaurant for the youth, while parents enjoyed their own meal at Eataly. One youth summed it up simply: “It was fun cooking together—it made us feel like one big family.” Day two at the Dana-Farber Cancer Institute featured presentations by top experts. Dr. Junne Kamihara shared Updated Screening Recommendations, highlighting the importance of vigilance and multi-modality approaches in early cancer detection.

Dr. Judy Garber delivered Living with LFS and Your Options, offering both medical insight and empathy to families. Dr. Elaine Shiang, widow of pioneering LFS researcher Dr. Fred Li, spoke warmly about her late husband before introducing keynote speaker Professor Arnold Levine, co-discoverer of TP53.

Levine dedicated his lecture to the late Professor Pierre Hainaut, a respected French researcher, and shared promising results on the TP53 YCCO2 variation, which has shown success in ovarian cancer and may soon enter clinical trials. “This is a path forward that gives us real hope,” Levine said, leaving families encouraged. For youth, the experience was immersive. DNA workshops with genetic counselors, lab tours with Dr. Kornelia Polyak’s team, and small mentoring groups created safe spaces for sharing and learning. Parents engaged in their own sessions, including Managing Transition with Dr. Brandy DeRosa and Kathy Schneider, which addressed the unique challenges of guiding children with LFS into adulthood. The impact was clear in participant feedback. “Meeting people like me is the biggest thing I will take home,” said a 24-year-old from Iowa. A first-time parent attendee added: “It was the most caring, warm, and welcoming experience. It felt like a family reunion, even though it was our first time.” For Perry, the workshop reaffirmed LFSA’s mission. “Science brings answers,” she reflected, “but community brings strength. When we bring them together, we create hope.” As she reminded families in Boston, LFSA’s role is not only to advance research but to ensure no family ever feels alone in facing LFS. She closed with words that captured the heart of the Boston gathering: “Every workshop is not just about information—it is about transformation. Our youth are not only patients, they are future scientists, doctors, and advocates. They are the reason we continue to push forward.” The Boston workshop not only advanced scientific understanding but also deepened bonds among families, youth, and professionals. It achieved what LFSA set out to do years ago—empower young people to see beyond diagnosis and to find courage in community.

Youth attending the 5th biannual workshop in Boston Massachusetts, piece together toys that can be used as building blocks to form DNA with specific alterations to best depict how the alterations in the Tp53 appear in the LFS case. In summary, the youth workshop, hosted by the Dana-Farber Cancer Institute and Boston Children’s Hospital Cancer and Blood Disorders Center, underscored the need to accelerate LFS awareness programs and cancer advocacy in general, to educate and inform the public about this unique and rare inherited disorder that predisposes families to multiple cancers.

It’s a wake-up call to institutions tasked with offering healthcare services and organizing similar events that much more needs to be done to bridge the information gap. Since information is power, once the public is empowered with the right and relevant knowledge, people are better able to make mature decisions concerning their health—because health is wealth. Delegates and youth representatives came from three continents—Europe, North America, and South America—while Africa was notably absent from this year’s LFS Fifth Biannual Youth Workshop, held in Boston, Massachusetts, United States. The writer, Joel Magu, Health Journalist & Strategic Communication Consultant.