Key Rare Cancer Syndrome Gets An Awareness Day and Month

March 20th is Li-Fraumeni Syndrome Awareness Day and March is Li-Fraumeni Syndrome Awareness Month

The genetic mutation that causes Li-Fraumeni syndrome has the potential to unlock cancer

FOR IMMEDIATE RELEASE: February 5, 2021 (download release as PDF)

East Coast: Greg Harper
President, Living LFS, Inc.
1 (508) 525-5380
greg@livinglfs.org
West Coast:  Andi Last
Vice President, Living LFS, Inc.
1 (619) 292-8811
andi@livinglfs.org
Tre Shelly and his mother, Trishia Shelly-Stephens, have Li-Fraumeni syndrome. Both are currently fighting cancer. (Trishia Shelly-Stephens)
Tre Shelly and his mother, Trishia Shelly-Stephens, have Li-Fraumeni syndrome. Both are currently cancering. (Photo: Trishia Shelly-Stephens)

Trishia Shelly-Stephens is living with Chronic Lymphocytic Leukemia, her fourth cancer, while her 28-year-old son Tre is in treatment for metastatic sarcoma, his most recent of several cancers. Trish, Tre, and over 1,000 other multigenerational families worldwide have a rare genetic condition called Li-Fraumeni Syndrome, or LFS: a predisposition to developing a wide range of cancers.

Trish is a founding member of Living LFS, a non-profit patient support organization incorporated in 2014 to encourage, empower and educate those living with Li-Fraumeni syndrome. Today, Living LFS established March 20th, 2021 as the first Li-Fraumeni Syndrome Awareness Day, and March 2021 as the inaugural Li-Fraumeni Syndrome Awareness Month.

“Li-Fraumeni syndrome is a rare condition caused by a hereditary (germline) mutation in the TP53 tumor suppressor gene, often referred to as the guardian of the genome.  Even though having LFS is rare, TP53 mutations occur in over 50% of cancers and have been reported in almost every type of cancer,” says Jaclyn Schienda, genetic counselor at Dana-Farber Cancer Institute. “If we can better understand LFS, we can better understand cancer.”

“A condition as important as Li-Fraumeni Syndrome really should have its own awareness day and month, so Living LFS created them,” says Shelly-Stephens. “LFS Awareness Day is March 20, the birthday of Living LFS’ founder, Jennifer Mallory.” Mallory, a fierce advocate for LFS patients, died of metastatic breast cancer in 2020.

The month long LFS awareness campaign in March will highlight stories from LFS families and facts about Li-Fraumeni syndrome shared across traditional media and social media. LFS Awareness Day will also include financial support for families with the genetic cancer syndrome. 

“LFS can have a devastating financial impact,” says Living LFS President, Greg Harper, “so as a part of Li-Fraumeni Syndrome Awareness Month, on March 20 Living LFS is awarding ten $530 hardship grants to help families struggling with the costs of living with LFS.”

To learn more, to help raise awareness of Li-Fraumeni syndrome, to donate to Living LFS, or to apply for an LFS hardship grant, visit http://www.LFSawareness.com

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2 Responses

  1. We lost my daughter Stacia Danford 2 weeks ago. She was told she had LFS after her 1st bout of breast cancer in 2013 when she was 28. Two years later she had a reoccurrence of breast cancer and was fighting it up until she passed...
    Six weeks ago she was diagnosed with leukemia and sent to City of Hope where she received treatment and had successfully gotten rid of the leukemia, things were going well. Until they found a rare fungal infection in her lungs and she passed away the same day they got the biopsy results. She is the only one in our family that had LFS. I miss my sweet daughter so much♥️

    1. I'm so sorry for your loss Stephanie. Thank you for sharing Stacia's story with us. Wishing you strength and peace. ♥️

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