March 20th is Li-Fraumeni Syndrome Awareness Day

March is Li-Fraumeni Syndrome Awareness Month

Read and share the press release!

Donate to LFS Hardship Grants!

May 3rd (5/3) is International LFS Awareness Day

What is Li-Fraumeni Syndrome?

Li-Fraumeni syndrome (LFS) is one of 7,000 rare diseases that affect 25-30 million Americans. It is estimated that over 500 families in the U.S. and over 1,000 multigenerational families worldwide have Li-Fraumeni syndrome. Li-Fraumeni syndrome is linked to a mutation in the TP53 tumor suppressor gene, which provides instructions for making tumor protein p53. Sometimes called the “Guardian of the Genome,” the TP53 gene is vital in preventing cancer from forming. TP53 is also the most frequently mutated gene in human cancer. If we unlock Li-Fraumeni syndrome, we could unlock cancer.  People with a TP53 mutation have a significantly increased risk of developing cancer over their lifetime. LFS affects each individual differently, even within the same family. Learn more about LFS. Originally known as sarcoma, breast, leukemia and adrenal gland (SBLA) syndrome, Li-Fraumeni syndrome or LFS is named after Dr. Frederick Pei Li and Dr. Joseph F. Fraumeni, Jr., two American physicians who in 1967 began making the connections between specific cancers in certain families. Now more than 50 years later, through the passions and efforts of many researchers and clinicians around the world, the history, the various functions of p53, and its connection to Li-Fraumeni syndrome are still being uncovered. Learn more about the history of LFS.
Team P53: Li-Fraumeni Syndrome
LFS Awareness Day 2022 online gathering
LFS Awareness Day Online Gathering, 2022

LFS AWARENESS EVENTS AND ACTIVITIES

Join us at this LFS Awareness Day, March 20th:

  • 12pm Pacific: Introduction to Mindful Self-Compassion (MSC): Life with LFS and cancer is HARD! Learn how to be kind to yourself when times are tough. LFS Patient Navigator & MSC Facilitator Amelia Coffaro and Dr. Camella Rising, PhD, MS, RDN, Research Fellow at the National Cancer Institute, will provide an overview of Mindful Self-Compassion, reactions to MSC from campers at Living LFS’ 2024 Family Camp, and how to begin implementing this beneficial practice in our own difficult lives.

  • 12:30pm Pacific – Ask a Genetic Counselor: How do you read those letters and numbers in your genetic test results? What is the LFS spectrum? Get your general genetics questions answered by Living LFS’ newest board member and Medical Advisory Board Chair, Carly Grant, MS, LCGC, Senior Genetic Counselor at the Massachusetts General Hospital (MGH) Center for Cancer Risk Assessment (CCRA).

  • 1pm Pacific – One-on-One Cancer Support: If you live the LFS life, you know that sometimes the best therapy for cancer is just talking to someone who’s been there. Jackie Herigodt, Director of Partnerships and Engagement at Imerman Angels, will share how to give or receive peer-to-peer cancer support.

  • 1:30pm Pacific – Celebrate Jennifer Mallory’s 49th Birthday! LFS Awareness Day is on March 20th because of Living LFS founder Jennifer Mallory (March 20, 1976 – October 5, 2020). Bring your favorite stories and memories of Jen to share with the community.

  • 1:45pm Pacific – LFS Hardship Grants Final Tally! Also in Jen’s honor, on March 20th we award LFS Hardship Grants to those struggling with the costs of living with LFS. Let’s celebrate the final tally of dollars raised and grants awarded!

EMAIL hello@livinglfs.org for the link to register to attend!

Watch all previous LFS Awareness Day videos.

HOW YOU CAN HELP RAISE LI-FRAUMENI SYNDROME AWARENESS

DOWNLOAD our Informational Rack Card in English | German | Dutch | Portuguese | French | Spanish and share it with friends, family, loved ones, care providers, cancer facilities, and oncology departments! (Coming soon in Greek!)

SHARE our social media images in English | German | Dutch | Portuguese with the hashtags #LFSawarenessday #LFSawarenessmonth #LFSawareness #lifraumenisyndrome 

WEAR your official LFS Awareness Day t-shirt on March 20! Post your photos on social media with the hashtags #IAmLivingLFS #LFSawarenessday #LFSawarenessmonth #LFSawareness #lifraumenisyndrome and tag Living LFS on Facebook, Instagram, Twitter andLinkedIn.

GIVE: Donate $53 for the TP53 gene, or $26.50 (half of 53, since only half of our TP53 genes are functional!) You can also donate $5.30, $530, $1060, or any amount – it all helps to support the Li-Fraumeni syndrome community. Encourage your friends, family, colleagues and networks to donate too!
WEAR BLUE: You can wear blue too! Share photos with the hashtag #WearBlueForLFS, and tag Living LFS and The George Pantziarka TP53 Trust on Facebook, Twitter and Instagram.
AMPLIFY your personal LFS story: email your videos, photos, and blog posts about living with Li-Fraumeni syndrome to hello@LivingLFS.org and we will share them on our website and social media during LFS Awareness Month and LFS Awareness Day!
HONOR your loved ones from the Li-Fraumeni syndrome community who have passed on. Share their stories, photos and memories on our Memorial Wall.

GRANTS: Anyone who has dealt with cancer and LFS knows how difficult it can be to ask for help when you need it. LFS Hardship Grants are awarded every March 20th and October 5th to families and individuals facing financial hardships due to Li-Fraumeni syndrome. The grant dollar amounts and the number of grants awarded are determined by donations received! 

REACH OUT to local media to be interviewed and share your story for LFS Awareness Day and LFS Awareness Month. Distribute our press release!

SUBSCRIBE to the Living LFS mailing list to stay up to date on all our LFS patient support activities, and encourage others to subscribe!

REMEMBERING: LFS PATIENT ADVOCATES

Jennifer Mallory (March 20, 1976 – October 5, 2020) was an LFS patient, and a fierce advocate for providing emotional and psychosocial support for those living with Li-Fraumeni syndrome. Jen founded Living LFS, a fully volunteer-led 501(c)(3) non-profit patient support organization with the mission to encourage, empower, and educate those living with Li-Fraumeni syndrome by connecting them with care, resources, and others who are Living LFS. Jen passed from metastatic breast cancer in 2020. We mark LFS Awareness Day on Jen Mallory’s birthday, March 20.
John Berkeley, 2017
John Berkeley (May 14, 1970 – August 2, 2018) was also an LFS patient, and he was passionate about LFS awareness. John established the first ever online Li-Fraumeni syndrome patient support group, at a website called MD Junction, and was the first president of the LFS Association. In 2016, Jen said about John, “he has been an integral behind the scenes force and advocate for support and advocacy in our community.  We worked together closely founding LFSA and he supported my passion for support and when I decided to focus on support through a new direction with Living LFS.” John passed from glioblastoma in 2018.

Jennifer Mallory and John Berkeley were key drivers in ensuring that those living with Li-Fraumeni syndrome would never fight LFS alone. They are both deeply missed, and we are grateful for all of their contributions to the Li-Fraumeni syndrome patient community.