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
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
With LFS, we face many cancers with many long term side effects.
2 out of 5 women face swelling after breast cancer surgeries and treatment, but anytime lymph nodes are compromised, there can be edema. Lymphedema can be managed if caught early and treated.
2 out of 5 women face swelling after breast cancer surgeries and treatment, but anytime lymph nodes are compromised, there can be edema. Lymphedema can be managed if caught early and treated.
October 8, 2025 at 9:50 AM
With LFS, we face many cancers with many long term side effects.
2 out of 5 women face swelling after breast cancer surgeries and treatment, but anytime lymph nodes are compromised, there can be edema. Lymphedema can be managed if caught early and treated.
2 out of 5 women face swelling after breast cancer surgeries and treatment, but anytime lymph nodes are compromised, there can be edema. Lymphedema can be managed if caught early and treated.
Today, October 5, 2025, we are so proud to share how you have helped us to honor Living LFS founder Jennifer Mallory:
FALL 2025 LFS HARDSHIP GRANTS
Today Living LFS awards a total of $21,000 to 21 families struggling with the costs of living with Li-Fraumeni syndrome! Our initial pledge: $10,000
FALL 2025 LFS HARDSHIP GRANTS
Today Living LFS awards a total of $21,000 to 21 families struggling with the costs of living with Li-Fraumeni syndrome! Our initial pledge: $10,000
October 5, 2025 at 12:01 PM
Today, October 5, 2025, we are so proud to share how you have helped us to honor Living LFS founder Jennifer Mallory:
FALL 2025 LFS HARDSHIP GRANTS
Today Living LFS awards a total of $21,000 to 21 families struggling with the costs of living with Li-Fraumeni syndrome! Our initial pledge: $10,000
FALL 2025 LFS HARDSHIP GRANTS
Today Living LFS awards a total of $21,000 to 21 families struggling with the costs of living with Li-Fraumeni syndrome! Our initial pledge: $10,000
Link to the Toronto Protocol: livinglfs.org/screening-th...
#lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #lifraumenisyndromeawareness #p53 #tp53 #tp53gene #cancergenetics #geneticcancer #cancerfighter #breastcancer #breastcancerawarenessmonth #breastcancer #feelitonthefirst
#lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #lifraumenisyndromeawareness #p53 #tp53 #tp53gene #cancergenetics #geneticcancer #cancerfighter #breastcancer #breastcancerawarenessmonth #breastcancer #feelitonthefirst
October 3, 2025 at 10:31 AM
October is Breast Cancer Awareness Month. Most women with LFS are very much aware of breast cancer.
The risk of women with LFS getting breast cancer is higher than the general population.
The risk of women with LFS getting breast cancer is higher than the general population.
October 1, 2025 at 11:44 AM
October is Breast Cancer Awareness Month. Most women with LFS are very much aware of breast cancer.
The risk of women with LFS getting breast cancer is higher than the general population.
The risk of women with LFS getting breast cancer is higher than the general population.
You can find the book here: amzn.to/3PQnvf2
#lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #lifraumenisyndromeawareness #childhoodcancerawareness #childhoodcancerawarenessmonth #pediatriccancer #childhoodcancer #gogoldinseptember
#lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #lifraumenisyndromeawareness #childhoodcancerawareness #childhoodcancerawarenessmonth #pediatriccancer #childhoodcancer #gogoldinseptember
September 30, 2025 at 2:57 PM
National Hereditary Cancer Week ’s goal is to create awareness for Hereditary Cancers.
Li-Fraumeni syndrome (LFS) is one of 7,000 rare diseases that affect 25-30 million Americans. Li-Fraumeni syndrome (LFS) is linked to a mutation in the TP53 tumor suppressor gene.
Li-Fraumeni syndrome (LFS) is one of 7,000 rare diseases that affect 25-30 million Americans. Li-Fraumeni syndrome (LFS) is linked to a mutation in the TP53 tumor suppressor gene.
September 29, 2025 at 9:44 AM
National Hereditary Cancer Week ’s goal is to create awareness for Hereditary Cancers.
Li-Fraumeni syndrome (LFS) is one of 7,000 rare diseases that affect 25-30 million Americans. Li-Fraumeni syndrome (LFS) is linked to a mutation in the TP53 tumor suppressor gene.
Li-Fraumeni syndrome (LFS) is one of 7,000 rare diseases that affect 25-30 million Americans. Li-Fraumeni syndrome (LFS) is linked to a mutation in the TP53 tumor suppressor gene.
#lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #lifraumenisyndromeawareness #p53 #tp53 #tp53gene #cancergenetics #geneticcancer #geneticmutation #rarediseases #cancerfighter #childhoodcancerawareness #childhoodcancerawarenessmonth #pediatriccancer #childhoodcancer #gogoldinseptember
September 28, 2025 at 12:20 PM
September 26, 2025 at 10:16 AM
Our littlest warriors are often the most resilient and can teach us so much about happiness even during the toughest times. But wouldn't it be nice if they didn't have to?
#childhoodcancerawareness #childhoodcancerawarenessmonth #pediatriccancer #childhoodcancer #gogoldinseptember
#childhoodcancerawareness #childhoodcancerawarenessmonth #pediatriccancer #childhoodcancer #gogoldinseptember
September 23, 2025 at 11:13 AM
Our littlest warriors are often the most resilient and can teach us so much about happiness even during the toughest times. But wouldn't it be nice if they didn't have to?
#childhoodcancerawareness #childhoodcancerawarenessmonth #pediatriccancer #childhoodcancer #gogoldinseptember
#childhoodcancerawareness #childhoodcancerawarenessmonth #pediatriccancer #childhoodcancer #gogoldinseptember
#lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #tp53 #tp53gene #cancergenetics #geneticcancer #geneticmutation #rarediseases #cancerfighter #childhoodcancerawareness #childhoodcancerawarenessmonth #pediatriccancer #childhoodcancer #gogoldinseptember #BrysonBrave
September 22, 2025 at 10:10 AM
Our applications for the 2025 Fall Living LFS Spring Hardship Grants are now closed!
If you'd like to contribute to Living LFS Hardship Grants donate here:
livinglfs.org/donate/ .
#lifraumenisyndrome #livinglfs #iamlivinglfs #cancergenetics
#LLFShardshipgrants #hardshipgrants
If you'd like to contribute to Living LFS Hardship Grants donate here:
livinglfs.org/donate/ .
#lifraumenisyndrome #livinglfs #iamlivinglfs #cancergenetics
#LLFShardshipgrants #hardshipgrants
September 21, 2025 at 11:59 PM
Our applications for the 2025 Fall Living LFS Spring Hardship Grants are now closed!
If you'd like to contribute to Living LFS Hardship Grants donate here:
livinglfs.org/donate/ .
#lifraumenisyndrome #livinglfs #iamlivinglfs #cancergenetics
#LLFShardshipgrants #hardshipgrants
If you'd like to contribute to Living LFS Hardship Grants donate here:
livinglfs.org/donate/ .
#lifraumenisyndrome #livinglfs #iamlivinglfs #cancergenetics
#LLFShardshipgrants #hardshipgrants
Help us help individuals like Katie and make the financial burden of Living with LFS a little easier.
More donations means more LFS Hardship Grants! Please encourage people in your community to donate today!
Donate here:
livinglfs.org/donate/
#lifraumenisyndrome
#LLFShardshipgrants #hardshipgrants
More donations means more LFS Hardship Grants! Please encourage people in your community to donate today!
Donate here:
livinglfs.org/donate/
#lifraumenisyndrome
#LLFShardshipgrants #hardshipgrants
September 20, 2025 at 11:08 AM
Help us help individuals like Katie and make the financial burden of Living with LFS a little easier.
More donations means more LFS Hardship Grants! Please encourage people in your community to donate today!
Donate here:
livinglfs.org/donate/
#lifraumenisyndrome
#LLFShardshipgrants #hardshipgrants
More donations means more LFS Hardship Grants! Please encourage people in your community to donate today!
Donate here:
livinglfs.org/donate/
#lifraumenisyndrome
#LLFShardshipgrants #hardshipgrants