Families of children with Li-Fraumeni syndrome are invited to join a dedicated day of education, connection, and support at Children’s National Hospital. This Family Education Day will feature presentations from physicians, researchers, and care team members, along with updates on the latest research, clinical care, and future directions in LFS.Attendees will also have the opportunity
The Li-Fraumeni Syndrome Association (LFSA) is honored to announce the establishment of the Katherine M. Howley Endowment Fund for Li-Fraumeni Syndrome Research. This generous gift will allow the LFSA to award biennial research grants of up to $50,000 to the best and brightest minds in science who are working to discover and implement accessible
As I reflect on my recent trip to California to attend the Stand Up To Cancer Scientific (SU2C) Summit, it is a frigid 2°F outside here in Massachusetts. The contrast with Pasadena’s warm sunshine is striking. Yet what remains most memorable is not the weather, but the warmth inside the summit itself. The energy
Lakita Frida was an energetic dynamo when she attended her first LFSA Youth Workshop in New York City back in 2023. This young Kenyan continues to be an unstoppable force. Lakita, who serves as the Youth Coordinator for LFSA - Africa, is pursing advanced studies in psychology, sociology and literature. Though soon to be enrolled
The use of radiation is a challenge for Li-Fraumeni syndrome patients in regard to the increased risk of developing secondary, radiation-induced cancers. However, advances in treatment protocols with radiation are rendering it a more viable option as deemed necessary in treating certain cancers. This paper by researchers in Morocco reviews other papers on the topic
The American Association of Cancer Research (AACR) has published a useful article on the financial impact of young adults who have been diagnosed with cancer in their Cancer Today magazine. The article provides financial resources (to include Dollar For, etc.) and practical tips for navigating the burden of medical costs (such as requesting payment plans with
Researchers continue to study the psycho-social impact of Li-Fraumeni syndrome on young adults and their concerns about LFS, determining that effectively managing the challenges requires interdisciplinary care teams, including mental health providers, genetic counselors, and physicians. Read more here. (2025)
US-based researchers assessed the performance of (non-contrast) annual whole-body MRI as part of a multimodality screening for individuals with Li-Fraumeni syndrome for early cancer detection. These researchers concluded that, in conjunction with other methods endorsed by LFS guidelines, annual wbMRI substantially contributes to the detection of localized, asymptomatic cancers across the spectrum of LFS. The
New prospective data from a German study indicate that annual whole-body MRI for LFS surveillance could be shortened and may not require contrast agent while still detecting new cancers. Larger studies are needed before this becomes standard practice to ensure reliable detection across the entire, diverse LFS tumor spectrum. The goal is a patient-friendly,
Lakita at the LFSA's Youth Workshop in 2023 LFSA - Africa's Media Relations Specialist Joel Magu has published another article in Kenyan news for LFS awareness in Africa. Here is told the story of loss and endurance by LFSA - Africa's Communications Director Joyce Mwangi and her daughter, Lakita. Also told is the
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