History of Living LFS

2020

Living LFS members once again advocate for those with Li-Fraumeni Syndrome at Rare Disease Week on Capitol Hill in Washington, DC. 

2020 Rare Disease Week on Capitol Hill

2019

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 2019 Family Camp

2018

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.

Living LFS at the 2018 LFS Symposium

2017

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.

Love Never Dies, Ilonka Dee's tribute to her son Kaj*

2016

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.

2014

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

2013

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.

2009

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.