Living LFS - Li-Fraumeni Syndrome

05/29/2026

Michael can’t wait to take the mound at PNC Park today.
“It might seem like a little deal for someone else, but it’s a big deal for me because I think it’s awesome,” he said. “I’ve always wanted to throw out a first pitch at a baseball game.”

A moving story about strength, community, and living with Li-Fraumeni syndrome. Thank you Michael and Elizabeth for bringing awareness to Li-Fraumeni syndrome and the families impacted by them every day. Stories like this matter. ⚾️

https://www.post-gazette.com/sports/pirates/2026/05/28/pirates-michael-naccarelli-pnc-park-li-fraumeni-syndrome/stories/202605280002?fbclid=IwY2xjawSFMVBleHRuA2FlbQIxMQBicmlkETFSSkFCMnF6ekJTTG1rTHFGc3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHvuPH5o8FDpOlk8AABErLMKylRaX_QNVHK16A-Vtdj5ME0u7iBA_R_lA-Fcg_aem_AFzx4SCjEPfM32H4aspSKg

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...

05/24/2026

The 2nd Annual Tre Shelly Memorial Golf Tournament is here!

Join Trishia Shelly-Stephens for a super fun golf scramble tournament to honor the ultimate cancer warrior, her son Tre Shelly, who passed away on August 17, 2023 after living with several cancer diagnoses during his short 31 years.

If you are in MT we'd love to have you join us on the course! This is a fundraiser for Living LFS - Li-Fraumeni Syndrome. And if you can’t attend but would still like to support Living LFS, donations are always deeply appreciated.

https://tre-shelly-memorial-golf-tournament.perfectgolfevent.com

Together, we honor Tre.

05/21/2026

92 days till camp! We are hard at work planning family camp and can't believe how quickly it's approaching! Did you book your flights yet? The Living LFS Jennifer Mallory Family Camp will be held at Camp Korey in Mount Vernon, Washington.

We still have plenty of space available, so if you're a family or individual with LFS, join us!

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: https://bit.ly/Camp2026RegistrationForm

Learn more about the Living LFS Jennifer Mallory Family Camp here: https://livinglfs.org/our-work/jennifer-mallory-family-camp/

05/21/2026

A Benefit for Cancer Genetics Research

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.
This special event, “The Power of Knowing: How Our Family History Is Shaping the Future of Cancer Care,” is being held in partnership with Penn Medicine’s Abramson Cancer Center, Dr. Kara Maxwell, and Living LFS.
Dr. Kara Maxwell, MD, PhD, is an Assistant Professor of Medicine and Genetics at Penn and a leader in inherited cancer genetics. Her work focuses on how inherited cancer risk, including Li-Fraumeni syndrome and TP53-related disorders, can help guide better prevention, earlier detection, and more personalized care for families at high risk.

For those of us affected by Li-Fraumeni syndrome, this work is deeply personal. Our families know how powerful knowledge can be: knowing our family history, knowing our risks, knowing how to screen, and knowing that research can help shape a better future.

Guests will enjoy an elegant evening with beverages, curated hors d’oeuvres, live music inspired by the sounds of the Gipsy Kings, a silent auction, and a meaningful conversation about how genetics is changing the future of cancer care.

Proceeds from the event will support Living LFS’s mission to provide community support for LFS patients and families, hardship grants for families facing the financial burden of LFS, and groundbreaking cancer genetics research in partnership with Penn Medicine’s Abramson Cancer Center.

Whether you can attend, donate, sponsor, or share this event, your support matters. Every gift helps advance research, support families, and bring hope to those living with hereditary cancer risk.

Please consider joining us or making a donation today:
https://living-lfs-inc.networkforgood.com/events/98760-a-benefit-for-cancer-genetics-research?fbclid=IwY2xjawR7psZleHRuA2FlbQIxMQBzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEeCiyoberIwf8FstEIRZ_6psG9qMYrqH8H2P-8w63T7yvWC5CQxgzAuNLiY4Y_aem_cFLJusA0sQX2mAJb1xCA3A

Together, we can support families living with LFS and help move cancer genetics research forward. 💙

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

05/20/2026

The Lainie Jones Comprehensive Cancer Survivorship Act was reintroduced on May 14 in the House of Representatives.
This is such an important step toward improving survivorship care and meeting the unique lifelong needs of cancer survivors, including the nation’s 521,000 childhood cancer survivors.

Lainie was part of the Living LFS – Li-Fraumeni Syndrome community and worked tirelessly to raise awareness. Seeing her advocacy continue to create meaningful change is truly amazing, and her legacy will help countless survivors and children in the future.

Please take a moment to contact your House representative and urge them to support and pass the Lainie Jones Comprehensive Cancer Survivorship Act.

Take action here: https://bit.ly/4eY570O

05/15/2026

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.

05/10/2026

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.

05/04/2026

May is Skin Cancer Awareness Month, and the first Monday of in May is Melanoma Monday - this year, that's today, May 4!

Melanoma Monday promotes regular skin checks and brings awareness to Melanoma, the most serious type of skin cancer. Melanoma occurs when the pigment-producing cells that give color to the skin become cancerous.

Risk factors of skin cancer may include family history, history of sun burns, prolonged sun exposure, fair skin or eyes, lots of moles, and irregular moles.

Remember to do self checks and make notes of any new changes. Symptoms of skin cancer include asymmetry, an uneven border, uneven color, diameter of greater than 6mm, or evolution of your mole - if you see any of these signs, get it checked by a dermatologist!

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!

05/03/2026

Happy International Li-Fraumeni Syndrome Awareness Day!

SHARE this LFS information (available in English, French, Spanish, Dutch, German, and Portuguese) to raise awareness.
Learn more about International LFS Awareness Day and download printable LFS info cards:
https://buff.ly/41SIOAl

We're excited to make these resources available to help spread awareness of Li-Fraumeni syndrome (LFS) in the international community!

05/01/2026

May is Mental Health Awareness Month. Navigating a cancer diagnosis or life after cancer is HARD!
Let's talk about it. What helps/helped you cope?
Our FB support groups are a great place to share, get info, vent, or just chat with people who get it.

Main support group: https://www.facebook.com/groups/lfssupport
Support group for Family & Friends: https://www.facebook.com/groups/674596832586102
Men’s Club support group: https://www.facebook.com/groups/951676349496681