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 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/

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!

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!

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...

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...

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

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...

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

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

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!

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.

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!

#LivingLFS #LiFraumeniSyndrome #NSGC #GeneticCounseling #PatientAdvocacy

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

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

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!

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.

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...

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.

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

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

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.

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

Link to the Toronto Protocol: livinglfs.org/screening-th... #lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #lifraumenisyndromeawareness #p53 #tp53 #tp53gene #cancergenetics #geneticcancer #cancerfighter #breastcancer #breastcancerawarenessmonth #breastcancer #feelitonthefirst

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.

You can find the book here: amzn.to/3PQnvf2 #lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #lifraumenisyndromeawareness #childhoodcancerawareness #childhoodcancerawarenessmonth #pediatriccancer #childhoodcancer #gogoldinseptember

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.

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

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

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

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

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

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

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

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

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/

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

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.

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

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

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

September 1st marks the beginning of Childhood Cancer Awareness Month. Having LFS increases the risk of cancer, even during childhood. Please contact us at [email protected] if you have a story you'd like to share.

Help us help families like Amber'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/

More donations means more LFS Hardship Grants! Please encourage people in your community to donate today! Donate here: livinglfs.org/donate/

On October 5, 2025, Living LFS will award a minimum of ten $1,000 hardship grants, for a minimum total of $10,000, to qualified applicants experiencing Li-Fraumeni syndrome-related financial hardships. Email [email protected] for the link to apply!

Our friends at the The George Pantziarka TP53 Trust have their annual meeting on Saturday, September 13 in London. It's a chance to meet other people with LFS, hear the latest news from researchers and doctors, and a chance to meet them in the flesh. www.eventbrite.co.uk/e/lfs-uk-202...

Happy World Elephant Day! We love Elephants- they became Living LFS’s mascot when we learned about Dr. Schiffman’s work with them. Elephants have 40 copies of the TP53 gene, the same gene that’s mutated in LFS. Check out the story below! bit.ly/DrSchiffman_...