Living LFS
@livinglfs.bsky.social
Encouraging, empowering, and educating those living with Li-Fraumeni syndrome (LFS), an inherited #cancer predisposition. Website: LivingLFS.org #LFS #LiFraumeni #LiFraumenisyndrome #TP53 #P53 #GeneticCancer #genetics #tp53gene
National Hereditary Cancer Week ’s goal is to create awareness for Hereditary Cancers.
“Walter is a 5 year survivor from Choroid Plexus Carcinoma and entering 1st grade. This boy has shown us so many incredible things even on a difficult medical journey.” ~Walter’s Mom~ #lifraumenisyndrome #iamlivinglfs #childhoodcancerawareness #childhoodcancerawarenessmonth #gogoldinseptember
The window to apply for the 2026 Living LFS Fall Hardship Grants will CLOSE TODAY AT 8PM EST. Email hello@livinglfs.org for the link to apply. If you'd like to contribute to Living LFS Hardship Grants donate here: livinglfs.org/donate/
More donations means more Living LFS Hardship Grants! Please encourage people in your community to donate today! Donate here: livinglfs.org/donate/ Here are some testimonials to show the impact of our Hardship Grants!
"Living with LFS has taught us one thing, be grateful for the days you get to wake up, love the ones you’re with, and thank God that you have all control of your lifestyle to be the healthiest version of yourself because if we can help it, LFS will not control us." Paige ~ Kyler's Mom.
Since 2021, Living LFS has awarded $380,020 in Hardship Grants! Apply NOW through Sept. 21 at 5pm PT for our next round. Email hello@livinglfs.org for the link. Know someone who should apply? Tag them! 💙 More donations = more grants! Donate: livinglfs.org/donate
Snarky Cancer and Mutant Printing & Promotions are closing. For a limited time, you can still order your Living LFS gear here: www.snarkycancer.com/collections/...
September is Childhood Cancer Awareness Month. 5-10% of pediatric cancers are associated with hereditary cancer syndromes. These pediatric cancers are sometimes red flags that further genetic testing may be recommended: adrenocortical cancer, leukemia, brain tumors and sarcomas.
Having the post one week family camp feels? Us too. One week ago we said our goodbyes, but the memories, knowledge and life changing connections will remain. We were honored to live out Jennifer Mallory's goal of uniting LFS families together. Uniting as one big Living LFS Family 💚💙
🐘🤔 What kind of shenanigans are going on here?! 😂 And WHY are those guys walking off with an elephant?! 👀 Something tells us there’s more to this story… 🐘✨ Tune in tomorrow to find out!
Day 2 at Family Camp brought learning, laughter & tears. 💚 Dr. Schiffman shared about LFS & elephants, followed by breakout sessions, bracelet making & handprints. BBQ fun, bouncy castles, face painting & a talent show led to our Memorial Walk honoring those forever in our LFS family.
Day one at Family Camp was packed with connection, inspiration, and fun! 💚 TED Talks, breakout sessions, arts & crafts, archery, rock climbing, and lava rock bracelets filled the day. We listened as Lawrence Ingrassia honored Dr. Fraumeni, then ended with paint, wine & plenty of laughter!
A little anxious. A LOT excited. And finally… TOGETHER AGAIN! After two years apart, old friends reunited, new friendships began, and the hugs said it all. That’s the magic of Family Camp: reconnecting, finding your people, making memories, and knowing you belong. 💚 Together, we are family.!!
Reading this and wondering what the heck family camp is? Learn more and donate to support the next one: livinglfs.org/our-work/jen...
The Living LFS Jennifer Mallory Family Camp officially kicks off in 5 days! From August 21st till August 24th, we will come together at Camp Korey in Mount Vernon, Washington for our 4th Living LFS Jennifer Mallory Family Camp. We are so thrilled to be together in 5 days!!
Happy World Elephant Day! We love Elephants- they became Living LFS’s mascot when we learned about Dr. Schiffman’s work with them. Elephants have 40 copies of the TP53 gene, the same gene that’s mutated in LFS. healthcare.utah.edu/press-releas...
LFS presents tough and overwhelming decisions about screening, treatment, reproduction. We find it helps to deal with the biggest threat at the time. It’s important to treat the cancer you have, not the cancer you are afraid of getting. Fight the shark closest to the boat!
During Ultraviolet Safety Month, the mission is to spread awareness about how important it is to protect our eyes and skin from the side effects of UV rays. For people with LFS, the Toronto Protocol recommends an annual dermatology examination. Here are some tips to protect yourself.
Today is Glioblastoma Awareness Day.  Brain tumors account for 9-14% of LFS tumors. Brain tumors are most common in LFS patients under 10 and over 20. The most common forms of brain tumors seen with LFS are Glioblastomas which is an aggressive type of cancer in the brain and/or spinal cord.
July 15th is Leiomysarcoma Awareness Day. Leiomysarcoma can be found almost anywhere in the body. Another reason why screening people with LFS is tricky, we literally need to be screened head to toe! They're common amongst LFS, that's why it's important to check out all lumps and bumps.
Limited financial assistance is available for travel to/from Family Camp. If financial hardship is preventing you from attending, email hello@livinglfs.org ASAP with your phone number and a brief description of your situation. A board member will contact you.
Hear from Trishia Shelly-Stephens, Vice-President and Founding Member, as she reflects on the unforgettable impact of the Living LFS Jennifer Mallory Camp and the connections, joy, and hope it brings to our community. Register here: bit.ly/Camp2026Regi... FREE TO ATTEND