Author | Lightnews

Living LFS @livinglfs.bsky.social · 5d

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.

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Living LFS @livinglfs.bsky.social · 9d

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...

Living LFS @livinglfs.bsky.social · 12d

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.

Living LFS @livinglfs.bsky.social · 18d

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

Living LFS @livinglfs.bsky.social · 20d

#lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #lifraumenisyndromeawareness #p53 #tp53 #tp53gene #cancergenetics #geneticcancer #geneticmutation #rarediseases #cancerfighter #genetictesting #LLFS #mentalhealth #breastcancerawareness #breastcancerawarenessmonth

Living LFS @livinglfs.bsky.social · 23d

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.

Living LFS @livinglfs.bsky.social · 26d

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

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Living LFS @livinglfs.bsky.social · 28d

Link to the Toronto Protocol: livinglfs.org/screening-th...

#lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #lifraumenisyndromeawareness #p53 #tp53 #tp53gene #cancergenetics #geneticcancer #cancerfighter #breastcancer #breastcancerawarenessmonth #breastcancer #feelitonthefirst

Living LFS @livinglfs.bsky.social · Oct 1

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.

Living LFS @livinglfs.bsky.social · Sep 30

You can find the book here: amzn.to/3PQnvf2

#lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #lifraumenisyndromeawareness #childhoodcancerawareness #childhoodcancerawarenessmonth #pediatriccancer #childhoodcancer #gogoldinseptember

Living LFS @livinglfs.bsky.social · Sep 29

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.

Living LFS @livinglfs.bsky.social · Sep 28

#lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #lifraumenisyndromeawareness #p53 #tp53 #tp53gene #cancergenetics #geneticcancer #geneticmutation #rarediseases #cancerfighter #childhoodcancerawareness #childhoodcancerawarenessmonth #pediatriccancer #childhoodcancer #gogoldinseptember

Living LFS @livinglfs.bsky.social · Sep 26

livinglfs.org/how-a-family...

#gogoldinseptember

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Living LFS @livinglfs.bsky.social · Sep 23

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

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Living LFS @livinglfs.bsky.social · Sep 22

#lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #tp53 #tp53gene #cancergenetics #geneticcancer #geneticmutation #rarediseases #cancerfighter #childhoodcancerawareness #childhoodcancerawarenessmonth #pediatriccancer #childhoodcancer #gogoldinseptember #BrysonBrave

Living LFS @livinglfs.bsky.social · Sep 21

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

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Living LFS @livinglfs.bsky.social · Sep 20

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

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Living LFS @livinglfs.bsky.social · Sep 19

#lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #lifraumenisyndromeawareness #p53 #tp53 #tp53gene #cancergenetics #geneticmutation #rarediseases #cancerfighter #genetictesting #childhoodcancerawareness #childhoodcancerawarenessmonth #pediatriccancer #childhoodcancer #gogoldinseptember

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Living LFS @livinglfs.bsky.social · Sep 17

Some Li Fraumeni syndrome pediatric cancer facts. But remember, not everyone gets cancer and many children live happy normal lives. Our little heroes!

#lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #childhoodcancerawarenessmonth #pediatriccancer #childhoodcancer #gogoldinseptember

Living LFS @livinglfs.bsky.social · Sep 16

Help us help families like Amanda’s 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/

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Living LFS @livinglfs.bsky.social · Sep 13

#lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #p53 #tp53 #tp53gene #cancergenetics #geneticcancer #geneticmutation #rarediseases #cancerfighter #genetictesting #childhoodcancerawareness #childhoodcancerawarenessmonth #pediatriccancer #childhoodcancer #gogoldinseptember

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Living LFS @livinglfs.bsky.social · Sep 11

Help us fund more Hardship Grants:
Link to donate livinglfs.org/donate

Every person who applied for a hardship grant really needs the financial help. Let's work together and strive to get as many applications funded as possible.

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Living LFS @livinglfs.bsky.social · Sep 9

Help us help families like Andrea’s 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/

#LLFShardshipgrants #hardshipgrants #LivingLFS

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Living LFS @livinglfs.bsky.social · Sep 7

#lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #lifraumenisyndromeawareness #tp53gene #cancergenetics #geneticcancer #geneticmutation #rarediseases #cancerfighter #genetictesting #childhoodcancerawareness #childhoodcancerawarenessmonth #pediatriccancer #childhoodcancer #gogoldinseptember

Living LFS @livinglfs.bsky.social · Sep 4

We have 53 applicants so far and currently only ten $1,000 grants to award.

Every person who applied for a hardship grant really needs the financial help. Let's work together and strive to get as many applications funded as possible.

Link to donate livinglfs.org/donate

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