LI-FRAUMENI SYNDROME

Li-Fraumeni Syndrome (LFS) is linked to a mutation in the TP53 tumor suppressor gene.

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It's very difficult and sometimes lonely to face a rare syndrome. Meet the Living LFS community.

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The 4th Annual LFS Association Symposium is happening in April 2018! Through the Friends of Living LFS program, YOU can help us provide travel scholarships to our members, so they can learn the latest about Li-Fraumeni Syndrome and connect with others who are Living LFS! Visit www.livinglfs.org/friends-of-living-lfs/ to learn more and to donate. <3 ... See MoreSee Less

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30 Days of Thankful. We are Thankful for our caregivers. Often times in LFS, multiple family members are facing cancer at the same time- putting a burden on caregivers. Our own Trishia Shelly-Stephens shared her experiences with CURE Magazine, as a caregiver and patient with some insight into how training and help should be more accessible to our friends and family who are a vital part of our care community. www.curetoday.com/publications/cure/2016/summer-2016/training-could-make-the-caregiving-experienc... ... See MoreSee Less

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Dan Gordon co-wrote and produced the film, Let There Be Light - to our knowledge, the first motion picture to ever mention Li-Fraumeni Syndrome (LFS), a rare genetic predisposition to developing several different types of cancer. In this episode of the Learning Li-Fraumeni Syndrome video & audio podcast, Dan opens up to host Andi Last and talks about how his very personal experiences with LFS in his own life informed the writing of the movie. Watch or listen at livinglfs.org/podcast

Sean Hannity is executive producer of Let There Be Light, a faith-based film that stars Kevin Sorbo Official Facebook Page (Hercules, Andromeda) in his directorial debut, and his real-life wife Sam Sorbo Official Facebook Page. Sam Sorbo also co-wrote the film with Dan, screenwriter on movies like Passenger 57 and Wyatt Earp, and on TV shows like Highway To Heaven and Highlander. LTBL is in theaters now! Learn more at LetThereBeLightMovie.com

#LetThereBeLight #ShareTheLight ... See MoreSee Less

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by Andi Last  –  Li-Fraumeni Syndrome (LFS) has made it to the movies. Back in 2014, LFS was used in a plot line on the TV show, Grey’s Anatomy. Ann Ramer recapped the episode here. For a condition as rare as ours, this was a big deal in the LFS community. On October 27, 2017, Let There Be Light was released in movie theaters across the country, bringing LFS to the general public once again. (Thank you Susan Frary for letting … read more

November 9, 2017 was the first Genetic Counseling Awareness Day! Andi Last met up with Wendy Kohlmann, MS, CGC, a licensed genetic counselor at The University of Utah Huntsman Cancer Institute to explain the value of a genetic counselor after a diagnosis of Li-Fraumeni syndrome. Wendy discusses the importance of life long meetings with genetic counselors when you have LFS. Sometimes new information is available that could affect screening or treatment, sometimes what the patient can understand changes as they get older and different … read more