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Having trouble with insurance coverage of annual screenings as an LFS patient? In consideration of the challenges of LFS and supporting research (reference the Lancet article as supporting evidence), MRI screenings have become the new standard of care adopted by many of the institutions that care for pediatric LFS patients. Please encourage your insurance provider to contact any one of the centers referenced as LFS patient care providers on our webpage for guidance.

“Get Naked” with Melanoma Research Foundation’s self-screening guide.

DFCI’s Insight: Know your skin and get professionally screened – “Melanoma most commonly arises in the skin and with awareness and examination can be directly spotted in its very early stages – a huge advantage over most other cancers.”

MD Anderson: Play safe at home by lowering exposure to potential toxins.  (April 2015)

MSKCC’s On Cancer: on colorectal screening and preventing cancer. (April 2015)

American Cancer Society:  Consider genetic testing – thus far, research doesn’t show “a lot of long-term distress as a result of getting the information….” In fact, “most people (who test positive for a genetic predisposition) are proactive and engaged in risk reduction behaviors. People who test positive tend to take action through ‘engaging in enhanced screening, risk-reducing surgery, or chemo prevention.'” (Personalizing Care Part 3)

Cure magazine:  An Argument for Genetic Testing.  “….genetic testing for particular genetic mutations may save their lives if they are vigilant with their lifestyles and screenings – such a diagnosis does not necessarily entail a death sentence.” Additionally, genetic counseling, coupled with genetic testing, may provide immeasurable relief by reducing uncertainties. (March 18, 2015)

Save the date: Tuesday, March 24th, from 1:00 – 2:00 PM, EST. The Colon Cancer Alliance and Community Health Charities are hosting a webinar about colon cancer and your screening options. Learn what to expect during a screening, and register here.

National Cancer Insitute’s Cancer Topic: Detecting colon and rectal cancer. “No excuses.”

Available in the United Kingdom: Magnetic Resonance Imaging Screening In Li-Fraumeni Syndrome: An Exploratory Whole Body MRI Study. See if you can take advantage of this screening as an LFS patient in the UK. This study is open through the end of 2015:  SIGNIFY

Huntsman Cancer Institute:  lung cancer screening brochure

LFS Association

We are families, like you who have been devastated by the effects of Li-Fraumeni Syndrome, a hereditary cancer predisposition syndrome. Our hopes are to educate, raise awareness and find better screening programs and treatments for LFS.


Medical Resources

We've compiled a list of doctors available to
answer your questions, LFS support and
treatment. They specialize in many different
areas, which have been listed with their


LFS News

WETB’s Gayle Ong was one of several reporters covering the event and story of LFS and Mo Songs for Kerry.

Read More…

Community Events

Carly Grant – Mohawk Hudson River Marathon 2017
Support Carly and the Li-Fraumeni Syndrome Association as she raises money and trains for the Mohawk Hudson River Marathon on October 8th!


LFS Webinars

Check out our library to watch past LFS
webinars, and to find out about
upcoming webinars!

Learn more...

LFS Awareness Brochure

Myriad Genetics is proud to partner with LFSA to launch the global LFS Education and Awareness Campaign!