Living LFS - Li-Fraumeni Syndrome

10/19/2026

In LFS, we face many cancers with many long term side effects.
2 out of 5 women face swelling after breast cancer surgeries and treatment, but anytime lymph nodes are compromised, there can be edema. Lymphedema (swelling caused by damage to lymphatic system) can be managed if caught early and treated.

10/13/2026

Thinking of our stage 4 friends today and those we have lost from this horrible disease. Stage 4 needs more!

Metastatic Breast Cancer Awareness Day is celebrated on October 13th to raise awareness of the challenges faced by people with metastatic breast cancer (MBC) and to encourage research for a cure .

The day was established in 2009 to address the fact that women and men with MBC were often overlooked, despite Breast Cancer Awareness Month having been on the calendar since 1985 .
MBC is treatable but not curable, and those with the disease will need to receive treatment for the rest of their lives. Treatments focus on preventing the disease from spreading further and managing symptoms.

10/12/2026

FALL 2026 LFS HARDSHIP GRANTS

On October 5th Living LFS awarded a total of $20,000 to 20 families struggling with the costs of living with Li-Fraumeni syndrome!

We extend our love and gratitude every day to all those who have donated to LFS Hardship Grants in honor of Living LFS founder Jennifer Mallory.

Thank you, as always, to our partners at Snarky Cancer, who once again awarded a grant to a young adult sarcoma patient with LFS in honor of Tre Shelly, who passed on August 17, 2023.

Hardship Grants are funded by your generous donations. Thank you!
If you'd like to contribute to Living LFS Hardship Grants donate here:
https://livinglfs.org/donate/

10/09/2026

10/04/2026

Link to the Toronto Protocol: https://livinglfs.org/screening-the-toronto-protocol/

10/02/2026

October is Breast Cancer Awareness Month. Most women with LFS are very much aware of breast cancer.
The risk of women with LFS getting breast cancer is higher than the general population. The ages LFS women get breast cancer are significantly lower than the general population. The breast cancers LFS women get are typically hormone positive and HER2 positive, which makes them pretty angry tumors. It also makes them treatable. There are more treatment options directed towards these positive tumors than the negative ones.
But these numbers are not the only things that set LFS women apart from the average breast cancer community. Once p53 status is known, it can potentially change your course of treatment and screening in order to limit stress to an already struggling tumor suppressing system.

09/29/2026

“Three years ago our daughter, Amaya, was diagnosed with Brain Cancer, at the age of 8. She has a genetic mutation of the TP-53 gene, called Li-Fraumeni Syndrome. This gene mutation allows for very rare types of cancers to form and take flight in her body. She inherited this mutation from her father, Jerome Pleasant, who was a de novo carrier; meaning his mutation was not inherited and happened while in utero. Unknowingly, Jerome passed on this mutation to 3 of his 4 children: Talia, Amaya and August Pleasant. Sadly, Jerome and Talia have passed away; which means Amaya and August have quarterly screenings and scans to check for cancer. It was during Amaya’s annual full body MRI that found her brain tumor last summer.
Amaya underwent a new type of procedure called Laser Interstitial Thermal Therapy surgery, performed at University of Maryland Medical System She was the first pediatric patient to ever have this type of surgery at UMMC and the first LFS pediatric patient to receive it as well. Performed in a MRI machine under general anesthesia, a laser was inserted into the brain to destroy the tumor and surrounding tissue. There is very strict criteria to make you eligible for this surgery, and Amaya was the perfect candidate. As we speak, her case is being documented so that her story can be shared with doctors in the Pediatric Journal of Medicine. Our hope by sharing her story, is more children with brain tumors can receive this same surgery; and save their lives as well.”

09/27/2026

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

Li-Fraumeni syndrome (LFS) is one of 7,000 rare diseases that affect 25-30 million Americans. Li-Fraumeni syndrome (LFS) is linked to a mutation in the TP53 tumor suppressor gene. There are many types of TP53 mutations. People with this mutation have a higher risk of developing cancer over their lifetime. LFS affects each individual differently, even within the same family. Some families with LFS have higher rates of cancer incidence, while others do not.

Learn more at www.livinglfs.org

09/26/2026

Courtney’s cancer journey actually began before we knew she had Li Fraumeni Syndrome. In April 2025, at just 6 years old, she had a stage 1 adrenal tumor removed. At the time, we had no idea that this would be the beginning of a much bigger story.

Just a few months later, in September 2025, Courtney began having headaches and vomiting. We took her to the hospital, and our lives changed overnight. Doctors discovered a massive tumor in her cerebellum, about the size of a baseball. She underwent a 10 hour brain surgery and then a second surgery within two weeks.

Courtney was diagnosed with Grade 4 SHH medulloblastoma with a TP53 mutation. Further genetic testing confirmed that she has Li Fraumeni Syndrome.

Hearing that diagnosis as a parent was overwhelming. We weren’t just facing the cancer in front of us anymore. We were learning that Courtney carries a genetic condition that puts her at an increased risk of developing cancers throughout her lifetime.

But Courtney fought.

She completed six weeks of proton radiation in San Diego, followed by months of chemotherapy at CHOC. There were hospital stays, procedures, difficult days, and so many moments when she had to be braver than any child should ever have to be.

On July 22, 2026, she rang the bell after completing treatment.

And in August, her MRI and lumbar puncture came back CLEAR. Our girl is currently cancer free. 💛

Courtney turned 8 shortly after finishing treatment, and watching her step into this next chapter has been incredibly emotional. We know that because of Li Fraumeni, our journey doesn’t simply end with the words “cancer free.” There will be lifelong screening, scans, and fears that other families may not always understand.

That is one of the reasons I wanted to connect with Living LFS. I want Courtney to grow up knowing that she isn’t alone. I also hope that by sharing her story, we can help bring awareness to Li Fraumeni Syndrome, childhood cancer, genetic testing, and the importance of continued research.

Through everything, Courtney has remained funny, strong, loving, and full of life. Cancer and Li Fraumeni are part of her story, but they will never define who she is.

Thank you for allowing families like ours to have a community and a place where our stories can be heard.

~Jo Anne, Courtney's Mom~

09/25/2026

“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~