History of Living LFS
Living LFS establishes March as Li-Fraumeni Syndrome Awareness Month and March 20th as Li-Fraumeni Syndrome Awareness Day. The 20th is chosen in honor of the birth anniversary of Living LFS founder and patient support advocate, Jennifer Mallory.
Living LFS establishes an LFS hardship grant program. Funded entirely from donations, grants are awarded every March 20th and October 5th to families struggling with the costs of living with Li-Fraumeni syndrome.
Living LFS hosts the first ever multi-day LFS FAMILY CAMP at Camp MAK-A-DREAM in Montana. 85 family members gathered to share stories, participate in fun events like archery, ziplining and campfire songs. Art therapy, Nutrition, Coping with Diagnosis, Genetics, Whole body MRI, and Parenting with LFS breakout sessions were offered daily. 74 members volunteered blood samples for a research study on circulating tumor DNA in LFS.
Living LFS provides 14 travel scholarships to the 4th Annual LFSA Symposium in Toronto. Living LFS offers an exhibit table with resources, educational materials and becomes a place for support group members to gather.
Two Living LFS members advocate for LFS at Rare Disease Week on Capitol Hill in Washington, DC. Living LFS accepts an award on behalf of Illonka Dee whose piece “Love Never Dies,” featuring her son Kaj*, won the Rare Disease Art Contest, raising awareness for LFS.
Living LFS provides three travel scholarships for Support Group Members to attend the 2016 REACH 3rd International LFSA Conference in Ohio. Living LFS increases awareness of our support services by providing information and resources at an exhibit table.
Living LFS formally incorporates as a nonprofit to support LFS families. Living LFS hosts their first meet-up in Portland, Oregon. 20 people affected by LFS meet up to share stories, experiences, and learn via web about how pediatric adrenocortical tumors are linked to TP53 mutations.
Living LFS founders meet in person at the 1st Annual Li-Fraumeni Syndrome Conference in Boston. Living LFS increases awareness of our support services by providing information and resources at an exhibit table.
Founders meet through an online support group on Facebook. By 2020, membership in Living LFS Support Groups online reach over 2,000 people diagnosed with or caring for someone with Li-Fraumeni Syndrome.