For those of you who are new, welcome, we are so happy you've joined us! For those who have been with us, we're so glad you're still here. We hope you're weathering this strange time with strength and togetherness.
By way of re-introduction, we are Living LFS. We encourage, empower, and educate those living with Li-Fraumeni Syndrome by connecting them with care, resources, and others who are Living LFS. Informally, we like to say we're all about "Fighting Cancer and Supporting Mutants."
FACEBOOK GROUPS: Living LFS created and moderates two private Facebook groups, the Li-Fraumeni Syndrome Support Group, (1300+ members strong) for those with LFS, and the Li-Fraumeni Syndrome Family and Friends Group (800+ members strong) specifically for family members, caregivers and friends of those with LFS. If you aren't already in one of our support groups, feel free to request to join the one appropriate for you.
FAMILY CAMP: In October 2019 Living LFS presented our first ever LIVING LFS FAMILY CAMP with 85 family members in attendance for fun, learning, and support. 74 members volunteered blood samples for a brand new research study on circulating tumor DNA in LFS. Camp was an unqualified success, and in spite of COVID-19 uncertainty, we are eagerly planning the next Family Camp with a target date of mid-2021.Through this mailing list we will keep you updated with the latest camp planning and ways you can get involved!
NEW WEBSITE! We are so pleased and excited to present the brand new LivingLFS.org! With many thanks to our friends at Underground Creative for their work in making the site gorgeous and navigable, and to our own Living LFS member Fannie Lemay for raising the funds that made this redesign possible! Please check out Fannie's blog post, Mental Health is Dope, Y'all, officially the first new post on our new, beautiful website. Have a look around the site and let us know what you think!
To celebrate the new site, we will be doing some Living LFS swag giveaways in the coming days on our public social media pages - make sure you're following us on your favorite:
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Thank you again for being a part of Living LFS. We have much more in store. This community is about YOU! If there is something you'd like to see on LivingLFS.org, or something you'd like to see us as an organization do for the LFS community, don't hesitate to reach out.
