Living LFS
@livinglfs.bsky.social
Encouraging, empowering, and educating those living with Li-Fraumeni syndrome (LFS), an inherited #cancer predisposition.
Website: LivingLFS.org
#LFS #LiFraumeni #LiFraumenisyndrome #TP53 #P53 #GeneticCancer #genetics #tp53gene
It's official, the 2026 Living LFS Jennifer Mallory Family Camp will be at Camp Korey in Mount Vernon, Washington, August 21-24, 2026! Mark your calendars now! Registration will open on January 3, 2026. More details to come.
www.campkorey.org
#livinglfs #livinglfsfamilycamp2026 #familycamp2026
www.campkorey.org
#livinglfs #livinglfsfamilycamp2026 #familycamp2026
December 19, 2025 at 11:20 AM
It's official, the 2026 Living LFS Jennifer Mallory Family Camp will be at Camp Korey in Mount Vernon, Washington, August 21-24, 2026! Mark your calendars now! Registration will open on January 3, 2026. More details to come.
www.campkorey.org
#livinglfs #livinglfsfamilycamp2026 #familycamp2026
www.campkorey.org
#livinglfs #livinglfsfamilycamp2026 #familycamp2026
12 days till the holidays!
THESE are the 12 months of LFS! 💚🐘💙
#lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #lifraumenisyndromeawareness #p53 #tp53 #tp53gene #cancergenetics #geneticcancer #geneticmutation #rarediseases #cancerfighter
THESE are the 12 months of LFS! 💚🐘💙
#lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #lifraumenisyndromeawareness #p53 #tp53 #tp53gene #cancergenetics #geneticcancer #geneticmutation #rarediseases #cancerfighter
December 13, 2025 at 12:51 PM
12 days till the holidays!
THESE are the 12 months of LFS! 💚🐘💙
#lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #lifraumenisyndromeawareness #p53 #tp53 #tp53gene #cancergenetics #geneticcancer #geneticmutation #rarediseases #cancerfighter
THESE are the 12 months of LFS! 💚🐘💙
#lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #lifraumenisyndromeawareness #p53 #tp53 #tp53gene #cancergenetics #geneticcancer #geneticmutation #rarediseases #cancerfighter
These Toronto Protocol journals created by Lisa Wickens are on our website to help you keep track of everything related to your Li-Fraumeni syndrome Toronto Protocol screenings! Download the PDFs of our website, print your favorites, and stay organized! www.livinglfs.org/resources/#s...
December 7, 2025 at 4:07 PM
These Toronto Protocol journals created by Lisa Wickens are on our website to help you keep track of everything related to your Li-Fraumeni syndrome Toronto Protocol screenings! Download the PDFs of our website, print your favorites, and stay organized! www.livinglfs.org/resources/#s...
Living LFS is a volunteer-run nonprofit organization supporting individuals and families affected by Li-Fraumeni syndrome. Your support brings The Jennifer Mallory Family Camp and other patient-focused initiatives to life.
Donate here: livinglfs.org/donate/
Donate here: livinglfs.org/donate/
December 2, 2025 at 10:46 AM
Living LFS is a volunteer-run nonprofit organization supporting individuals and families affected by Li-Fraumeni syndrome. Your support brings The Jennifer Mallory Family Camp and other patient-focused initiatives to life.
Donate here: livinglfs.org/donate/
Donate here: livinglfs.org/donate/
Happy Thanksgiving from all of us at Living LFS! We are thankful for YOU!
November 27, 2025 at 1:00 PM
Happy Thanksgiving from all of us at Living LFS! We are thankful for YOU!
We are thankful for you! Thank you so much for your donations! Because of you, we’re able to host our Family Camp and offer Hardship Grants to families who need a little extra help. Thanks for spreading the word about Li-Fraumeni syndrome and for being such an important part of our community!
November 26, 2025 at 12:27 PM
We are thankful for you! Thank you so much for your donations! Because of you, we’re able to host our Family Camp and offer Hardship Grants to families who need a little extra help. Thanks for spreading the word about Li-Fraumeni syndrome and for being such an important part of our community!
10 Days of Thankful.
We are Thankful for nurses who offer exceptional care and compassion. The special nurses who take extra time with us, listen to our needs and take extra steps to make living with LFS a little easier. Please take this opportunity to share a thank you with your favorite nurses!
We are Thankful for nurses who offer exceptional care and compassion. The special nurses who take extra time with us, listen to our needs and take extra steps to make living with LFS a little easier. Please take this opportunity to share a thank you with your favorite nurses!
November 25, 2025 at 2:46 PM
10 Days of Thankful.
We are Thankful for nurses who offer exceptional care and compassion. The special nurses who take extra time with us, listen to our needs and take extra steps to make living with LFS a little easier. Please take this opportunity to share a thank you with your favorite nurses!
We are Thankful for nurses who offer exceptional care and compassion. The special nurses who take extra time with us, listen to our needs and take extra steps to make living with LFS a little easier. Please take this opportunity to share a thank you with your favorite nurses!
10 Days of Thankful.
We are Thankful for the Toronto Protocol. Dr. Malkin and his team at SickKids Foundation made huge strides publishing a series of tests for those with LFS, which we refer to as the Toronto Protocol.
www.livinglfs.org/resources/#s...
We are Thankful for the Toronto Protocol. Dr. Malkin and his team at SickKids Foundation made huge strides publishing a series of tests for those with LFS, which we refer to as the Toronto Protocol.
www.livinglfs.org/resources/#s...
November 24, 2025 at 11:30 AM
10 Days of Thankful.
We are Thankful for the Toronto Protocol. Dr. Malkin and his team at SickKids Foundation made huge strides publishing a series of tests for those with LFS, which we refer to as the Toronto Protocol.
www.livinglfs.org/resources/#s...
We are Thankful for the Toronto Protocol. Dr. Malkin and his team at SickKids Foundation made huge strides publishing a series of tests for those with LFS, which we refer to as the Toronto Protocol.
www.livinglfs.org/resources/#s...
10 Days of Thankful.
We are Thankful for Genetic Counselors who help us identify TP53 mutations, evaluate our risk and deal with the physical and emotional aspects of LFS.
For more information on Genetic Counselors- www.livinglfs.org/genetic-coun...
We are Thankful for Genetic Counselors who help us identify TP53 mutations, evaluate our risk and deal with the physical and emotional aspects of LFS.
For more information on Genetic Counselors- www.livinglfs.org/genetic-coun...
November 22, 2025 at 1:06 PM
10 Days of Thankful.
We are Thankful for Genetic Counselors who help us identify TP53 mutations, evaluate our risk and deal with the physical and emotional aspects of LFS.
For more information on Genetic Counselors- www.livinglfs.org/genetic-coun...
We are Thankful for Genetic Counselors who help us identify TP53 mutations, evaluate our risk and deal with the physical and emotional aspects of LFS.
For more information on Genetic Counselors- www.livinglfs.org/genetic-coun...
10 Days of Thankful.
We are Thankful for Elephants! And the researchers like Dr. Joshua Schiffman whose passion and out of the box thinking gives us with LFS -HOPE!
Here’s why: www.youtube.com/watch?v=ThRR...
#lifraumenisyndrome #livinglfs #elephants #elephantsandhope #drjoshuaschiffman
We are Thankful for Elephants! And the researchers like Dr. Joshua Schiffman whose passion and out of the box thinking gives us with LFS -HOPE!
Here’s why: www.youtube.com/watch?v=ThRR...
#lifraumenisyndrome #livinglfs #elephants #elephantsandhope #drjoshuaschiffman
November 20, 2025 at 1:10 PM
10 Days of Thankful.
We are Thankful for Elephants! And the researchers like Dr. Joshua Schiffman whose passion and out of the box thinking gives us with LFS -HOPE!
Here’s why: www.youtube.com/watch?v=ThRR...
#lifraumenisyndrome #livinglfs #elephants #elephantsandhope #drjoshuaschiffman
We are Thankful for Elephants! And the researchers like Dr. Joshua Schiffman whose passion and out of the box thinking gives us with LFS -HOPE!
Here’s why: www.youtube.com/watch?v=ThRR...
#lifraumenisyndrome #livinglfs #elephants #elephantsandhope #drjoshuaschiffman
10 Days of Thankful.
We are thankful for our Family Camps, Adult Getaways and Meet Ups. Living LFS is so happy to be able to bring families together to find connections and make lifetime friendships.
livinglfs.org/.../living-l...
We are thankful for our Family Camps, Adult Getaways and Meet Ups. Living LFS is so happy to be able to bring families together to find connections and make lifetime friendships.
livinglfs.org/.../living-l...
November 18, 2025 at 11:03 AM
10 Days of Thankful.
We are thankful for our Family Camps, Adult Getaways and Meet Ups. Living LFS is so happy to be able to bring families together to find connections and make lifetime friendships.
livinglfs.org/.../living-l...
We are thankful for our Family Camps, Adult Getaways and Meet Ups. Living LFS is so happy to be able to bring families together to find connections and make lifetime friendships.
livinglfs.org/.../living-l...
10 Days of Thankful.
We are Thankful for the countless researchers past and present who strive to find answers, treatments and options for our rare families with Li-Fraumeni Syndrome.
#lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #p53 #tp53 #tp53gene #LLFS #cancerresearch
We are Thankful for the countless researchers past and present who strive to find answers, treatments and options for our rare families with Li-Fraumeni Syndrome.
#lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #p53 #tp53 #tp53gene #LLFS #cancerresearch
November 16, 2025 at 12:55 PM
10 Days of Thankful.
We are Thankful for the countless researchers past and present who strive to find answers, treatments and options for our rare families with Li-Fraumeni Syndrome.
#lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #p53 #tp53 #tp53gene #LLFS #cancerresearch
We are Thankful for the countless researchers past and present who strive to find answers, treatments and options for our rare families with Li-Fraumeni Syndrome.
#lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #p53 #tp53 #tp53gene #LLFS #cancerresearch
10 Days of Thankful.
We are thankful for our caregivers. Often times in LFS, multiple family members are facing cancer at the same time- putting a burden on caregivers. Thank you to the caregivers in our lives, it takes a village!
#lifraumenisyndrome #livinglfs #iamlivinglfs #caregivers
We are thankful for our caregivers. Often times in LFS, multiple family members are facing cancer at the same time- putting a burden on caregivers. Thank you to the caregivers in our lives, it takes a village!
#lifraumenisyndrome #livinglfs #iamlivinglfs #caregivers
November 14, 2025 at 11:23 AM
10 Days of Thankful.
We are thankful for our caregivers. Often times in LFS, multiple family members are facing cancer at the same time- putting a burden on caregivers. Thank you to the caregivers in our lives, it takes a village!
#lifraumenisyndrome #livinglfs #iamlivinglfs #caregivers
We are thankful for our caregivers. Often times in LFS, multiple family members are facing cancer at the same time- putting a burden on caregivers. Thank you to the caregivers in our lives, it takes a village!
#lifraumenisyndrome #livinglfs #iamlivinglfs #caregivers
Genetic Counselors are this community’s super heroes. They are on the front line connecting the science to the humanity of an incredibly difficult situation. It is a harrowing and stressful job and the LFS community couldn’t live their best LFS lives without them.
Thank you!
Thank you!
November 14, 2025 at 12:26 AM
Genetic Counselors are this community’s super heroes. They are on the front line connecting the science to the humanity of an incredibly difficult situation. It is a harrowing and stressful job and the LFS community couldn’t live their best LFS lives without them.
Thank you!
Thank you!
10 Days of Thankful.
We are Thankful for People Who "Get IT". Living with LFS can be overwhelming, stressful and sometimes very lonely. Others who share empathy and experiences offer comfort during the tough times.
We are Thankful for People Who "Get IT". Living with LFS can be overwhelming, stressful and sometimes very lonely. Others who share empathy and experiences offer comfort during the tough times.
November 12, 2025 at 4:44 PM
10 Days of Thankful.
We are Thankful for People Who "Get IT". Living with LFS can be overwhelming, stressful and sometimes very lonely. Others who share empathy and experiences offer comfort during the tough times.
We are Thankful for People Who "Get IT". Living with LFS can be overwhelming, stressful and sometimes very lonely. Others who share empathy and experiences offer comfort during the tough times.
10 Days of Thankful.
We are Thankful for B9 lumps. As a group, we are fairly lumpy and bumpy. Not all of the lumps are cancer- but when in doubt- get it checked out.
We are Thankful for boring scans. Whether it's for screening or treatment, the more boring the better with LFS!
We are Thankful for B9 lumps. As a group, we are fairly lumpy and bumpy. Not all of the lumps are cancer- but when in doubt- get it checked out.
We are Thankful for boring scans. Whether it's for screening or treatment, the more boring the better with LFS!
November 11, 2025 at 10:40 AM
10 Days of Thankful.
We are Thankful for B9 lumps. As a group, we are fairly lumpy and bumpy. Not all of the lumps are cancer- but when in doubt- get it checked out.
We are Thankful for boring scans. Whether it's for screening or treatment, the more boring the better with LFS!
We are Thankful for B9 lumps. As a group, we are fairly lumpy and bumpy. Not all of the lumps are cancer- but when in doubt- get it checked out.
We are Thankful for boring scans. Whether it's for screening or treatment, the more boring the better with LFS!
Families with Li-Fraumeni Syndrome, you can help us gain a better understanding of cancer risks associated with TP53 mutations by participating in the LiFT Up Study.
livinglfs.org/lift-up-li-f...
Link to the LiFT UP study:
liftupstudy.org
livinglfs.org/lift-up-li-f...
Link to the LiFT UP study:
liftupstudy.org
November 7, 2025 at 11:52 AM
Families with Li-Fraumeni Syndrome, you can help us gain a better understanding of cancer risks associated with TP53 mutations by participating in the LiFT Up Study.
livinglfs.org/lift-up-li-f...
Link to the LiFT UP study:
liftupstudy.org
livinglfs.org/lift-up-li-f...
Link to the LiFT UP study:
liftupstudy.org
Living LFS has been able to provide learning, support, connection, and financial assistance to those in need.
Help us continue making this vital impact for those with LFS. Every donation, large or small, makes a difference.
#givingtuesday2025
Help us continue making this vital impact for those with LFS. Every donation, large or small, makes a difference.
#givingtuesday2025
November 4, 2025 at 10:39 AM
Living LFS has been able to provide learning, support, connection, and financial assistance to those in need.
Help us continue making this vital impact for those with LFS. Every donation, large or small, makes a difference.
#givingtuesday2025
Help us continue making this vital impact for those with LFS. Every donation, large or small, makes a difference.
#givingtuesday2025
This month we remember to take the time to check in with our caregivers. Because you can't pour from an empty cup.
Do you have a favorite appointment buddy? Best nurse? Online BFF cheerleader?
Just yourself cause you're badass?....
Thank you to the caregivers in our lives, it takes a village!
Do you have a favorite appointment buddy? Best nurse? Online BFF cheerleader?
Just yourself cause you're badass?....
Thank you to the caregivers in our lives, it takes a village!
November 1, 2025 at 10:39 AM
This month we remember to take the time to check in with our caregivers. Because you can't pour from an empty cup.
Do you have a favorite appointment buddy? Best nurse? Online BFF cheerleader?
Just yourself cause you're badass?....
Thank you to the caregivers in our lives, it takes a village!
Do you have a favorite appointment buddy? Best nurse? Online BFF cheerleader?
Just yourself cause you're badass?....
Thank you to the caregivers in our lives, it takes a village!
Andi is a breast cancer survivor. She has LFS and explains in her blogpost why she does not do PINK in October. She gives us some valuable facts on breast cancer and many ways to take action to help breast cancer patients, raise awareness and actually support breast cancer research.
livinglfs.org.
livinglfs.org.
October 26, 2025 at 2:52 PM
Andi is a breast cancer survivor. She has LFS and explains in her blogpost why she does not do PINK in October. She gives us some valuable facts on breast cancer and many ways to take action to help breast cancer patients, raise awareness and actually support breast cancer research.
livinglfs.org.
livinglfs.org.
Between 2012 and 2020, Ilonka endured 26 rounds of chemotherapy, 53 sessions of radiotherapy, and countless surgeries.
Ilonka says: “No matter what lies ahead, we keep taking photographs with our hearts.”
Read her blogpost here: livinglfs.org/a-breast-can...
Ilonka says: “No matter what lies ahead, we keep taking photographs with our hearts.”
Read her blogpost here: livinglfs.org/a-breast-can...
October 22, 2025 at 10:08 AM
Between 2012 and 2020, Ilonka endured 26 rounds of chemotherapy, 53 sessions of radiotherapy, and countless surgeries.
Ilonka says: “No matter what lies ahead, we keep taking photographs with our hearts.”
Read her blogpost here: livinglfs.org/a-breast-can...
Ilonka says: “No matter what lies ahead, we keep taking photographs with our hearts.”
Read her blogpost here: livinglfs.org/a-breast-can...
Having a mutated p53 gene means our cells can't repair themselves. Leukemia is sometimes seen after treatment for a previous cancer diagnosis, and in pediatric LFS patients.
It is recommended blood work is done every 3 months for people with LFS to monitor changes in the blood work.
It is recommended blood work is done every 3 months for people with LFS to monitor changes in the blood work.
October 19, 2025 at 9:33 AM
Having a mutated p53 gene means our cells can't repair themselves. Leukemia is sometimes seen after treatment for a previous cancer diagnosis, and in pediatric LFS patients.
It is recommended blood work is done every 3 months for people with LFS to monitor changes in the blood work.
It is recommended blood work is done every 3 months for people with LFS to monitor changes in the blood work.
Thinking of our stage 4 friends today and those we have lost from this horrible disease. Stage 4 needs more!
#lifraumenisyndrome #livinglfs #iamlivinglfs #breastcancer #breastcancerawareness #breastcancerawarenessmonth #metastaticawareness #stage4needsmore #metastaticawarenessday #metavivor
#lifraumenisyndrome #livinglfs #iamlivinglfs #breastcancer #breastcancerawareness #breastcancerawarenessmonth #metastaticawareness #stage4needsmore #metastaticawarenessday #metavivor
October 13, 2025 at 9:08 AM
Thinking of our stage 4 friends today and those we have lost from this horrible disease. Stage 4 needs more!
#lifraumenisyndrome #livinglfs #iamlivinglfs #breastcancer #breastcancerawareness #breastcancerawarenessmonth #metastaticawareness #stage4needsmore #metastaticawarenessday #metavivor
#lifraumenisyndrome #livinglfs #iamlivinglfs #breastcancer #breastcancerawareness #breastcancerawarenessmonth #metastaticawareness #stage4needsmore #metastaticawarenessday #metavivor
