Genetic testing is not always a one and done process: the classification of a variant may change over time, technologies improve and better testing may become available; and guidelines and recommendations for testing and management change as we learn new information. This case in “Genetic Testing Challenges in Oncology" highlights some of these issues. The
Through the tremendous generosity of the Lesko and Fleming families, a newly established annual grant program will provide support for two youth personally impacted by Li-Fraumeni syndrome. Honoring the meaningful life and enduring memory of Cody Lesko, the empowerment grants will support adolescents and young adults to offset costs of enriching wellness, mental health
Our friends at MD Anderson have published the results from their prospective study validating a new, user-friendly method in determining if genetic testing should be pursued, referred to as LFSPRO. Developed to assist genetic counselors, LFSPRO is a statistical tool that analyzes a patient's full family history to estimate the likelihood of a TP53 mutation.
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
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
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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