A year ago, a group of ladies who became friends in a support group for LFS met up to talk about what we could do to generate more support, awareness, and research for LFS. We invited members of the LFS support group and anyone with Li-Fraumeni Syndrome to meet up with us. We had 20 brave souls reach out and join us for a lot of laughs and 2 days of sharing stories and information. We left, promising to meet up again.
In that year, every single member of our board has been profoundly affected by cancer. Personal cancers, helping care for family members with cancer as well as keeping up with day to day responsibilities. Yet these responsibilities - doctors appointments, treatments, surgeries dealing with insurance, and embracing living are all constant reminders of how much of a need there is in the LFS community for support.
This website is the culmination of a lot of efforts. Friends from the meeting stepped up and helped by sharing experience and time. It will grow with us as our needs change. Those experienced with LFS know how often and dramatically needs can change. I can't thank Ami enough for the countless hours she's spent helping us get here. She is the backbone of this webpage and Sarvesh is our fairy godfather! Thank you to Shannon for providing the pixie dust and design for our new logo.
To my fellow board members and founders, Trish, RD, Ann, Jen, Courtney, and D'Ana, this was truly a team effort. Thank you for joining me on this adventure, sharing your time, expertise and being committed and encouraging as we forge ahead, creating a new supportive path with those affected by LFS.
Through this site, we can now reach a broader audience and bring greater awareness of LFS to our communities. It takes a village to help a family LIVE LFS and this is just the beginning. Our vision includes more meetings for those with LFS and their families, more comprehensive resources and up to date information on all things LFS, as well as supporting each other and research that is important for those with Li-Fraumeni Syndrome. Here's to Living LFS! And many more hugs in person! Jen Mallory