Our Work

Living LFS Mission Statement

We encourage, empower, and educate those living with Li-Fraumeni Syndrome by connecting them with care, resources, and others who are Living LFS.

Living LFS Vision Statement

Our vision is to provide emotional support and resources to make living LFS easier.

Living LFS Core Values

  • Community
  • Compassion
  • Respect
  • Integrity
  • Levity

Community

We connect those with Li-Fraumeni Syndrome to each other online and provide support every day. Cancer can be isolating and LFS even more so. Given it’s rarity, most with LFS haven’t met other mutants outside their family. In our private support group, we have members from all over the world who speak many different languages, but most importantly understand LFS. Another benefit of mutants being different time zones also means someone is usually awake to lend an online ear. We strive to make Living with LFS easier through the support network of people who understand hereditary cancer.

Compassion

We are living with LFS. We love those with LFS. No two journeys or experiences are the same. We listen, we communicate and we support. Our group is a safe place. With so many people and a variety of cancers, it is encouraging to share with others in similar situations, overcoming cancer, overcoming fear, loss and other emotional hurdles. In essence, we care for individuals affected by LFS.

RESPECT

We serve a diverse community and feel everyone has a right to be supported and treated fairly. LFS creeps into every decision in our lives, not just our medical issues. Decisions about how to plan a family, chart a career, seek treatment, undergo testing, screening and limiting our risk. At Living LFS we recognize these decisions are not easy and we respect that people make tough choices. We respect each situation is unique and hard and we respect each other.

Integrity

We are open, honest and straightforward. We try to do the right thing. We focus our energy and resources on the LFS community we serve. While most of our work is done through a private online support group and is not open to public scrutiny, we are open about all the other aspects of our organization and what we do. We are working with researchers and clinicians to help connect our community to the best resources available for LFS. We also like to share the latest encouraging research.

Levity

We like to laugh. We deal with a lot of situations and challenges that are anything BUT funny. Yet somehow in it all we try to find the laughter and use it as a positive coping mechanism. At Living LFS we try to keep the focus on “living” and promote healing through a uniquely snarky brand of humor. In our support group, we affectionately call ourselves mutants and use this term as a badge of honor, respect and nod to how we try to find fun while living with a hereditary cancer syndrome.