Support

ONLINE SUPPORT: The Short Version

Living LFS is active and public on Facebook, Instagram, Twitter and LinkedIn. We welcome you to become a part of any of our public online communities.

Li-Fraumeni Syndrome Support Group: private Facebook group specifically for those living with LFS, their caregivers, and parents of minors with LFS.

Li-Fraumeni Support Group – Men’s Club: private Facebook group specifically for men living the LFS life to discuss the unique challenges they face.

Li Fraumeni Syndrome Family and Friends: private Facebook group for those who supporting someone living with LFS.

Each of these groups provides a private place to ask questions and share experiences.

Facebook Page & Support Groups: More Details

Families who have this condition are rare and special. Facebook gives us the power to network, share stories, ask for advice, and make friends around the world. If you are not a member of Facebook, we highly recommend that you join – if only to connect with our Facebook Page or Closed Groups! And just a note….. you may see the term “mutant” in these discussions. The term mutant is used in reference to those who have the TP53 mutation and trust that it is used only as a term of endearment. We respect that some people might immediately take offense to this – but we ask you to genuinely take a step back and understand that when you are Living LFS day to day, a little levity goes a long way….. “Have you hugged a mutant today?!?!?”

Living LFS

Living LFS is a Facebook Page that is open to the public. All content, including posts by our organization and posts by you to the page can be seen by all Facebook users. We encourage you to “Like” and “Follow” this Page for Living LFS recommended news, research, blog posts, event information, opportunities to connect with others, and mutant humor!

Li-Fraumeni Syndrome Support Group

Li-Fraumeni Syndrome Support Group is a private Facebook group with people from all over the world who understand what it is like to be Living LFS. We limit this group to those with LFS, their primary caregiver, or for those undergoing testing for the P53 mutation. Only members of the group can see posts and news feed. A Closed Group allows a private and safe place for those with LFS to share experiences and provide support. We strongly feel that this Group mitigates the isolation that comes with Living LFS. Mutants here are pretty awesome. Once you ask to join this Group, the Group’s Administrator (a member of the Living LFS Board of Directors) will contact you via Facebook Messages to discuss your connection to LFS (Note; this communication may not appear in your normal “Inbox”. Be sure to review your “Other” messages).

Li-Fraumeni Support Group - men's club

Li-Fraumeni Support Group – Men’s Club is a place for men who are living within the blast radius of a Li-Fraumeni syndrome diagnosis. This private Facebook group is provided by Living LFS specifically for men 18 years of age and older who are diagnosed with Li-Fraumeni syndrome, parents of minors with LFS, and caregivers of people with LFS. As with the other private groups, only members of the group can see posts and news feed, and a member of the Living LFS Board of Directors may contact you prior to admittance, so check your “other” messages on Facebook.

Li-Fraumeni Syndrome Family And Friends

Li-Fraumeni Syndrome Family And Friends is also a private Facebook group. Only members of the group can see posts and news feed. This provides a private place for those who know and love those affected by LFS to get support and share stories. We encourage friends, family members, clinicians and anyone touched by LFS to ask to join the group. Behind every mutant is a terrific support system and we are most grateful for this. The group is also managed by Living LFS. As with the other private groups, only members of the group can see posts and news feed, and a member of the Living LFS Board of Directors may contact you prior to admittance, so check your “other” messages on Facebook.

Other Online Support Groups

SLF – Síndrome de Li–Fraumeni

SLF – Síndrome de Li – Fraumeni – Brasil is a Facebook Closed Group started by those with LFS in Brazil and is carried out in Portuguese. Only members of the group can see posts and news feed.

Breastcancer.org Discussion Board

Several forums discussing breast cancer specific topics.

Contact Us

While most of the Living LFS support work is carried out in Facebook groups, we recognize that not everyone uses this forum and we have other options for connecting with us:
  • Email our general inbox at hello@livingLFS.org or feel free to contact a Living LFS Board Member personally. We are spread across five time zones. Someone should get back to you pretty quickly.
  • Call us at 1-844-LFS-CALL (1-844-537-2255) If there is something that we might be able to help you with, dial us up, leave a message, and we will return your call as soon as possible.