iiinova — where your digital self keeps evolving

Living LFS @livinglfs.bsky.social · 27/09/2026

National Hereditary Cancer Week ’s goal is to create awareness for Hereditary Cancers.

Living LFS @livinglfs.bsky.social · 25/09/2026

“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

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Living LFS @livinglfs.bsky.social · 21/09/2026

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/

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Living LFS @livinglfs.bsky.social · 18/09/2026

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!

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Living LFS @livinglfs.bsky.social · 14/09/2026

"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.

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Living LFS @livinglfs.bsky.social · 09/09/2026

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

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Living LFS @livinglfs.bsky.social · 05/09/2026

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/...

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Living LFS @livinglfs.bsky.social · 02/09/2026

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.

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Living LFS @livinglfs.bsky.social · 31/08/2026

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 💚💙

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Living LFS @livinglfs.bsky.social · 30/08/2026

🐘🤔 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!

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Living LFS @livinglfs.bsky.social · 26/08/2026

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.

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Living LFS @livinglfs.bsky.social · 23/08/2026

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!

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Living LFS @livinglfs.bsky.social · 22/08/2026

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.!!

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Living LFS @livinglfs.bsky.social · 22/08/2026

Reading this and wondering what the heck family camp is? Learn more and donate to support the next one: livinglfs.org/our-work/jen...

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Living LFS @livinglfs.bsky.social · 16/08/2026

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!!

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Living LFS @livinglfs.bsky.social · 12/08/2026

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...

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Living LFS @livinglfs.bsky.social · 09/08/2026

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!

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Living LFS @livinglfs.bsky.social · 30/07/2026

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.

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Living LFS @livinglfs.bsky.social · 16/07/2026

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.

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Living LFS @livinglfs.bsky.social · 15/07/2026

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.

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Living LFS @livinglfs.bsky.social · 14/07/2026

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.

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Living LFS @livinglfs.bsky.social · 10/07/2026

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

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Living LFS @livinglfs.bsky.social · 06/07/2026

𝐈𝐟 𝐲𝐨𝐮 𝐤𝐧𝐨𝐰 𝐚𝐧𝐲𝐨𝐧𝐞 𝐰𝐡𝐨 𝐬𝐡𝐨𝐮𝐥𝐝 𝐚𝐭𝐭𝐞𝐧𝐝 𝐟𝐚𝐦𝐢𝐥𝐲 𝐜𝐚𝐦𝐩 𝐛𝐮𝐭 𝐡𝐚𝐬𝐧'𝐭 𝐫𝐞𝐠𝐢𝐬𝐭𝐞𝐫𝐞𝐝 𝐲𝐞𝐭, 𝐭𝐡𝐞 𝐝𝐞𝐚𝐝𝐥𝐢𝐧𝐞 𝐢𝐬 𝐉𝐮𝐥𝐲 𝟐𝟏𝐬𝐭! The 2026 Living LFS Jennifer Mallory Family Camp will be held at Camp Korey in Mount Vernon, WA, August 21-24, 2026. FREE to attend!! Tell your LFS friends to register here: bit.ly/Camp2026Regi...

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Living LFS @livinglfs.bsky.social · 05/07/2026

The 2nd Annual Tre Shelly Memorial Golf Tournament is just two weeks away! Join us for this Living LFS fundraiser here: tre-shelly-memorial-golf-tournament.perfectgolfevent.com Together, we honor Tre.

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Living LFS @livinglfs.bsky.social · 02/07/2026

July is sarcoma awareness month. Sarcomas are one of the core LFS cancers. For some of the most comprehensive up to date information, research and support for all types of sarcomas, please visit our friends at Sarcoma Alliance. www.sarcomaalliance.org

sarcomaalliance.org

Sarcoma Alliance | Support for your journey with sarcoma

We strive to improve the lives of people affected by sarcoma. Here, you'll find trustworthy information and a safe place to learn and share.

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Living LFS @livinglfs.bsky.social · 24/06/2026

We are deeply saddened by the passing of Joseph F. Fraumeni Jr.. Alongside Frederick Li, he helped identify Li-Fraumeni syndrome and advance understanding of inherited cancer risk. His work gave generations of families knowledge and hope. We honor his legacy and lasting impact on the LFS community.

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Living LFS @livinglfs.bsky.social · 21/06/2026

Wishing all the fathers a very happy Father's Day; the Dads taking care of their kids that are cancering, the Dads who are cancering, the Dads missing their babies, and the children missing their Dads.

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Living LFS @livinglfs.bsky.social · 15/06/2026

Catherine Wilsnack, PhD, LMSW, serves on the Living LFS Advisory Board and leads LFS mental health workshops at Family Camp. The Living LFS Family Camp (August 21-24, 2026) is FREE to attend! Register here: bit.ly/Camp2026Regi...

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Living LFS @livinglfs.bsky.social · 13/06/2026

Great educational opportunity for our community! On June 25, Dr. David Malkin will discuss advances in early cancer detection, surveillance, and prevention for people with TP53 mutations. FREE registration here: www.alexslemonade.org/childhood-ca...

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Living LFS @livinglfs.bsky.social · 07/06/2026

Today is National Cancer Survivors Day and June is National Cancer Survivors Month! Let's take time to celebrate how far you have survived and thrived! Recognize those who supported us along the way & give hope and inspiration to other cancer patients.

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Living LFS @livinglfs.bsky.social · 03/06/2026

Immunotherapy is a treatment using medication designed to boost the body’s natural defenses to fight cancer. It uses materials made by the body or in a laboratory to boost, target, or restore a person’s immune system.

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Living LFS @livinglfs.bsky.social · 29/05/2026

Michael can’t wait to take the mound at PNC Park today. “I’ve always wanted to throw out a first pitch at a baseball game.” A moving story about strength, family, community, and living with Li-Fraumeni syndrome. bit.ly/3S7xdx4

post-gazette.com

‘This brings me peace’: Local Pirates fan with an incurable cancer savors every pitch

Standing in his foyer waiting for company to arrive, Michael Naccarelli could feel the cancer slowly eating away at his body. It’s in his neck, his...

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Living LFS @livinglfs.bsky.social · 24/05/2026

The 2nd Annual Tre Shelly Memorial Golf Tournament to honor Tre Shelly, who passed away on August 17, 2023 after living with several cancer diagnoses during his short 31 years. This is a fundraiser for Living LFS. tre-shelly-memorial-golf-tournament.perfectgolfevent.com

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Living LFS @livinglfs.bsky.social · 21/05/2026

Living LFS is hosting A Benefit for Cancer Genetics Research on Wednesday, June 17, 2026, from 6:00 to 9:00 PM at Calissa in Water Mill, NY. Learn more, join us or donate here: living-lfs-inc.networkforgood.com/events/98760...

living-lfs-inc.networkforgood.com

A Benefit for Cancer Genetics Research

The Power of Knowing: How Our Family History Is Shaping the Future of Cancer Care

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Living LFS @livinglfs.bsky.social · 21/05/2026

92 days till camp! FREE to attend!! There is a refundable $53 fee per family group in order to hold your place, refunded upon arrival at camp! Register here: bit.ly/Camp2026Regi... Learn more about the Living LFS Jennifer Mallory Family Camp here: livinglfs.org/our-work/jen...

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Living LFS @livinglfs.bsky.social · 20/05/2026

The Lainie Jones Comprehensive Cancer Survivorship Act was reintroduced May 14. A major step toward better lifelong care for cancer survivors, including 521,000 childhood cancer survivors. Lainie’s advocacy continues to create change. Urge Congress to pass it: bit.ly/4eY570O

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Living LFS @livinglfs.bsky.social · 15/05/2026

Gray matters! May is brain cancer awareness month - but for many living LFS with brain tumors- it is a daily awareness. Brain tumors are a core LFS cancer. Brain MRIs are recommended yearly to monitor for changes. #braincancerawarenessmonth #braincancer #braintumor #gogray #gograyinmay

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Living LFS @livinglfs.bsky.social · 10/05/2026

Celebrating all our very special Mothers today: the Momcologists, the Moms who are cancering, the Moms missing their babies, and the children missing their Moms. We honor and hold space for you all today. Happy Mother’s Day, with Love from Living LFS.

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Living LFS @livinglfs.bsky.social · 04/05/2026

It is recommended that individuals with Li-Fraumeni syndrome should have their skin evaluated by a dermatologist at least once a year. As always, early detection is key!

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Living LFS @livinglfs.bsky.social · 03/05/2026

Happy International Li-Fraumeni Syndrome Awareness Day! SHARE this LFS information to raise awareness. Learn more about International LFS Awareness Day and download printable LFS info cards: buff.ly/41SIOAl

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Living LFS @livinglfs.bsky.social · 01/05/2026

May is Mental Health Awareness Month. Join our support groups! Main support group: www.facebook.com/groups/lfssu... Support group for Family & Friends: www.facebook.com/groups/67459... Men’s Club support group: www.facebook.com/groups/95167...

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Living LFS @livinglfs.bsky.social · 25/04/2026

April 25th is National DNA Day- commemorating the discovery of DNA's Double Helix in 1953 and the completion of the Human Genome Project in 2003. Smack Dab in the middle of that, in 1979 the gene that makes us a LFS family was discovered by multiple researchers. TP53. #nationaldnaday

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