Living LFS will celebrate Li-Fraumeni Syndrome Awareness Month throughout March
FOR IMMEDIATE RELEASE: February 6, 2022
|Greg Harper |
President, Living LFS, Inc.
|Andi Last |
Vice President, Living LFS, Inc.
“My husband and youngest daughter both have LFS. My husband was just diagnosed with sarcoma in his femur and is currently going through (treatment). He is unable to work at this time. I am unable to work because I have to take care of him and our 3 girls.”
"I haven’t been able to work between surgery and 3 different types of cancer just in the last year."
"I traveled four hours for my first full body MRI and had to pay $895 out of pocket."
Stories like these are unfortunately common for those living with Li-Fraumeni syndrome (LFS), a rare genetic predisposition to developing a wide range of cancers. An individual or family with LFS, which affects more than 1,000 multigenerational families worldwide, may experience multiple cancers of different types throughout their lives, or even at one time. Insurance may not cover all or any of the associated costs.
In 2021, Living LFS, a 501(c)(3) patient support organization that encourages, empowers and educates those living with Li-Fraumeni syndrome, established March 20th as Li-Fraumeni Syndrome Awareness Day, and March as Li-Fraumeni Syndrome Awareness Month. As part of the 2021 awareness efforts, Living LFS was able to provide over $36,000 total in hardship grants to families with LFS, thanks entirely to donations to Living LFS.
"Between screening, treatment, travel, and loss of work, Li-Fraumeni syndrome can have a devastating financial impact on an LFS family," said Greg Harper, Living LFS President. "As a part of Li-Fraumeni Syndrome Awareness Month this year, on March 20th, Living LFS is awarding a minimum of twelve $1,000 hardship grants to help families struggling with all of the costs of living with LFS. Any donations we receive will mean more grants on March 20th."
"Donors can also commit to giving monthly as Living LFS sustaining members," Harper says. "Recurring donations allow us to provide more impactful hardship grants to those in need, make it possible for more people in the LFS community to attend the 2022 Living LFS Jennifer Mallory Family Camp, reach more people newly diagnosed with LFS, and change more lives."
To learn more about Li-Fraumeni syndrome, to donate to Living LFS, or to apply for an LFS hardship grant, visit LFSawareness.com