FOR IMMEDIATE RELEASE: February 27, 2022
Andi Last
Vice President, Living LFS, Inc.
andi@livinglfs.org
March is Li-Fraumeni Syndrome Awareness Month, and for the third year in a row, non-profit patient support organization Living LFS will provide hardship grants to families impacted by this rare cancer predisposition on Li-Fraumeni Syndrome Awareness Day, March 20th.
On LFS Awareness Day, which marks the 47th birth anniversary of Living LFS founder and passionate patient advocate Jennifer Mallory (March 20, 1976 - October 5, 2020), a minimum of ten $1,000 hardship grants will be awarded to LFS families struggling with the financial burdens of living with the hereditary cancer syndrome.
Additional hardship grants will be funded by LFS Awareness Day t-shirts purchased from partner organization Snarky Cancer, and further donations to Living LFS.
Since the first Li-Fraumeni Syndrome Awareness Day in 2021, Living LFS has connected 93 families in need with over $77,000 in LFS hardship grants.
Li-Fraumeni syndrome (LFS) is a rare, inherited cancer predisposition caused by a mutation of the TP53 gene. People with LFS have a 50% to greater than 90% lifetime risk of developing cancer, and it's not uncommon for multiple family members to be battling cancer at the same time.
"The costs of screening, travel to specialized cancer treatment, caregiving, and paying monthly bills when you are unable to work can become unmanageable really quickly," according to Living LFS founding member and Snarky Cancer owner, Trishia Shelly-Stephens.
"We're honored to continue fulfilling Jen Mallory's passion for supporting people with LFS, especially while they're "cancering."
With proper screening, LFS cancers can be caught early when they're most treatable. It's important to get an LFS diagnosis in order to be placed on a screening protocol. "A family history of cancer may not just be bad luck," said Living LFS Vice President, Andi Last. "Genetic testing for LFS - just a simple blood test - can save lives."
Members of the public are encouraged to learn more about LFS by attending virtual LFS Awareness Day activities on March 20th, including an educational session on the Li-Fraumeni spectrum, presented by genetic counselors Jaclyn Schienda (Dana-Farber Cancer Institute) and Carly Grant (Massachusetts General), and facilitated by Catherine Wilsnack, LMSW. Schienda and Wilsnack serve as members of Living LFS' all-volunteer Board of Directors.
To kick off Li-Fraumeni Syndrome Awareness Month, Living LFS representatives Nicole Scoubes and Lon Humpert will educate members of Congress about LFS and advocate for the LFS community as a part of Rare Disease Week on Capitol Hill in Washington DC from February 28th through March 2nd.
To learn more and to support those with LFS during Li-Fraumeni Syndrome Awareness Month, visit LFSawareness.com
2 Responses
My son-in-law has LFS and there 3year old and 5 month old daughters also have it , we have just been told his brain tumour has grown by 20% in the last 6 months he has had one operation and radiotherapy and is now waiting a second operation/chemotherapy waiting to speak to consultants how to I purchase a t shirt as I’m doing a sponsored head shave to help fund there expenses back and forwards to appointments thank you.
Hi Linda, I'm so sorry to hear this news. All our merchandise supporting Living LFS is available for purchase here: https://www.snarkycancer.com/collections/living-lfs-collection For fundraising, contact Snarky Cancer directly and they can help set up a t-shirt fundraiser too!