Li-Fraumeni Syndrome Association Canada

05/24/2026

Check out OHCRN's Dr. Raymond Kim, Tamara Braid and Katie Lark on Institute for Clinical Evaluative Sciences (ICES)'s podcast, in our VoICES! Thank you for having us.
🎧 Listen now: https://www.ices.on.ca/podcast/beyond-genetics-understanding-hereditary-cancer-with-dr-raymond-kim-tamara-braid-and-katie-lark/

05/24/2026

May is Von Hippel-Lindau (VHL) awareness month! We'd like to highlight the Canadian VHL Alliance (CVHLA), a non-profit supporting individuals and families with VHL. Learn more at https://cvhla.ca.
On June 6, OHCRN Clinical Program Manager Tamara will be attending CVHLA's 1st Food for Thought event at La Plume in Toronto.
If you or someone you know has VHL and would like to join us for lunch and conversation, you can register here: https://bit.ly/4ewbAjn.

05/24/2026

Reminder - Sign up to join tomorrow's webinar with Dr. Payal Khincha of National Cancer Institute at https://bit.ly/4dUREG3
She will discuss:
✅ Understanding the performance of cancer screening
✅ Evaluating effects of treatment on subsequent cancer risk
✅ Psychosocial impacts of LFS on individuals and families

Dr. Khincha leads the NCI’s long-running Clinical, Genetic, and Epidemiologic Study of families with LFS and will share insights from her work, including cancer surveillance strategies, risk characterization and treatment considerations.

05/13/2026

Genetic testing is a critical tool for families within the LFS community to identify those with increased risk and help direct screening for early detection of potential cancers.

For test results indicating a variant of uncertain significance (VUS) in the TP53 gene, our Genetic Counseling Advisory Group compiled these key points of consideration as a guide: https://bit.ly/48ZOWwl

Please share this and other resources available on genetic testing and screening available at lfsassociation.org.

05/12/2026

Our Medical & Scientific Advisory Board provides guidance globally to ensure advances in Li-Fraumeni syndrome research translate into meaningful improvements for LFS families. The collaborative expertise of the board is invaluable, each member's contributions integral and their perspectives unique.

Phuong Mai, MD, MS, is proud to directly interact with individuals with LFS and help facilitate care. Currently the Medical Director of the Cancer Genetics Program at UPMC, Dr. Mai was involved in epidemiologic and clinical research studies at National Cancer Institute aimed at better understanding familial cancer syndromes, particularly cancer risks and early detection and intervention in Li-Fraumeni syndrome.

She is hopeful that with better understanding of risks, we might eventually be able to formulate more individualized surveillance strategies. Dr. Mai loves photography and travel (pictured here in Wadi Rum, Jordan).

We are the Faces of LFS…we are LFS Strong.

05/08/2026

Predicting cancer risk more precisely in individuals with LFS was an area of significant discussion at our Symposium last fall.

Professor Christian Kratz, LFSA Medical & Scientific Advisory Board Member, and his team recently published findings on a new type of cluster analysis that makes customized cancer screening tests possible. Learn more at https://bit.ly/4hpurKN

05/07/2026

https://www.linkedin.com/posts/li-fraumeni-syndrome-association_throughout-intl-li-fraumeni-syndrome-awareness-activity-7457152895449247744-1NpP?utm_medium=ios_app&rcm=ACoAAAk3jmoBztIla1ZHIjsDzo90Pgm_RpOcIgQ&utm_source=social_share_video_v2&utm_campaign=copy_link

Throughout Intl. Li-Fraumeni Syndrome Awareness Month, we want to empower the community with resources, many of which are readily available through the LFSA site. Register now for this informative session in the Legacy of Hope webinar series to help locate and maximize info & updates, from the lates...

05/05/2026

Throughout Intl. Li-Fraumeni Syndrome Awareness Month, we want to empower the community with resources, many are readily available through the LFSA site.

Register now for this informative session in the Legacy of Hope webinar series to help locate and maximize info & updates, from the latest in research and screening recommendations to practical guidance on insurance/financials, glossary of common terms and frequently asked questions.

Sign up for free at at https://bit.ly/4do71GH

05/03/2026

Today, on International Li-Fraumeni Syndrome (LFS) Awareness Day, join us in a month dedicated to connection, education and action.

Please share our social media posts throughout May to help spread lifesaving awareness. Every action moves us closer to a future without LFS-related cancers. Consider starting or supporting a fundraiser to benefit LFS families and critical research. Encourage genetic testing. One conversation could change the future for an entire family!

Family resources are available at https://bit.ly/3OIcTBn