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# Living LFS: Li-Fraumeni Syndrome

Li-Fraumeni Syndrome | TP53 Gene Mutation

## Sitemaps

- [XML Sitemap](https://livinglfs.org/sitemap.xml): Contains all public & indexable URLs for this website.

## Posts

- [Comparing MRI vs PET/CT](https://livinglfs.org/comparing-mri-vs-petct/) - Recently in the private Li-Fraumeni Syndrome support group, there was a question about the difference between PET scans and MRI's and which was better. The answer is- it depends. Scans for screening have different considerations than scans that are used to diagnose possible cancers. Many of us living with LFS do our best to avoid
- [Volunteers Wanted for Living LFS](https://livinglfs.org/volunteers-wanted-for-living-lfs/) - You can help us help the ENTIRE Li-Fraumeni syndrome community! Note, these are not in order of importance - every volunteer, in any capacity, has the ability to make a huge difference. Contact us if you can help in any of the following ways:Writers, videographers, and photographers: Do you enjoy writing and sharing videos or
- [March is Li-Fraumeni Syndrome Awareness Month: Families With Devastating Cancer Condition to Receive Financial Relief](https://livinglfs.org/march-is-li-fraumeni-syndrome-awareness-month-families-with-devastating-cancer-condition-to-receive-financial-relief/) - Donations for LFS Hardship Grants will be matched up to $40,000. On March 20, get LFS questions answered and add strategies to your emotional toolbox to deal with LFS life.
- [Let's Turn $40K into $80K for Families Battling Cancer](https://livinglfs.org/lets-turn-40k-into-80k-for-families-battling-cancer/) - An anonymous donor is matching donations for LFS Hardship Grants! Give by March 6 to double your impact for families and individuals struggling with the costs of with a nasty cancer predisposition.
- [Award-Winning Journalist and Author Lawrence Ingrassia to Join Family Camp for Those Impacted by Genetic Cancer Disorder](https://livinglfs.org/award-winning-journalist-and-author-lawrence-ingrassia-to-join-family-camp-for-those-impacted-by-genetic-cancer-disorder/) - download as pdf FOR IMMEDIATE RELEASE: July 24, 2024 Non-profit organization Living LFS is excited to welcome author Lawrence Ingrassia to its upcoming family camp at Flying Horse Farms in Mt. Gilead, Ohio on August 24. Ingrassia's newest book, A Fatal Inheritance: How a Family Misfortune Revealed a Deadly Medical Mystery, chronicles his family's battle
- [Families Facing Rare Cancer Syndrome to Gather for Empowering Camp Experience with Acclaimed Author](https://livinglfs.org/families-facing-rare-cancer-syndrome-to-gather-for-empowering-camp-experience-with-acclaimed-author/) - download as pdf FOR IMMEDIATE RELEASE: June 17, 2024 Living LFS, a non-profit supporting families with Li-Fraumeni syndrome (LFS), announces its Jennifer Mallory Family Camp August 23-26, 2024 at Flying Horse Farms in Mt. Gilead, Ohio. LFS is a rare genetic condition that burdens those affected with a 70-90% lifetime risk of developing cancer. Children
- [May 3 is International LFS Awareness Day - 5/3 for p53](https://livinglfs.org/may-3-is-international-lfs-awareness-day-5-3-for-tp53/) - March 20 is LFS Awareness Day. May 3 is International LFS Awareness Day. Learn why, and get LFS information in your language.
- [Media Stories from the Li-Fraumeni Syndrome Community (Part 1)](https://livinglfs.org/media-stories-from-the-li-fraumeni-syndrome-community-1/) - Li-Fraumeni Syndrome may be rare, but the families and individuals whose lives have been affected by LFS have been featured in local, national, and international media on many occasions.
- [Families With High Cancer Risk Get Financial Relief During Li-Fraumeni Syndrome Awareness Month](https://livinglfs.org/families-with-high-cancer-risk-get-financial-relief-during-li-fraumeni-syndrome-awareness-month/) - March 2024 marks the 4th annual Li-Fraumeni Syndrome Awareness Month. Living LFS will award hardship grants to impacted families on LFS Awareness Day, March 20.
- [Port-a-Cath Pros and Cons: Should You Get a Port?](https://livinglfs.org/port-a-cath-pros-and-cons-should-you-get-a-port/) - Dr. James Lowe is an interventional radiologist and an LFS parent. He explains the benefits and disadvantages of having a port-a-cath for chemotherapy.
- [2023 Year in Review](https://livinglfs.org/2023-year-in-review/) - It's time to look back with you and celebrate all that we achieved together for the Li-Fraumeni syndrome community in 2023: Connected 47 LFS families in need to $47,000 in LFS Hardship Grants $124,320 in LFS Hardship Grants awarded to 140 families since 2021! Feb 28 - March 2, 2023: community members Nicole Cable and
- [2022 Year in Review](https://livinglfs.org/2022-year-in-review/) - As we prepare to ring in 2023, let's take a moment to look back and celebrate all that we achieved together for the Li-Fraumeni syndrome community in 2022...
- [Sex After Cancer: Survivorship and Intimacy](https://livinglfs.org/sex-after-cancer-survivorship-and-intimacy/) - After cancer, our sex lives can really suffer. Jenna Perkins, WHNP-BC from DiscovHER Health provides hope for our sexual health and well-being.
- [What is Breast MRI Like?](https://livinglfs.org/what-is-breast-mri-like/) - I have a nearly 100% lifetime risk of developing cancer. Annual breast MRI ensures any breast cancers are caught early, when they're most treatable.
- [LiFT UP! Li-Fraumeni & TP53: Understanding & Progress Study](https://livinglfs.org/lift-up-li-fraumeni-tp53-understanding-progress-study/) - Families with Li-Fraumeni Syndrome, you can help us gain a better understanding of cancer risks associated with TP53 mutations.
- [Help Us Fill the Gap Left by Amazon Smile](https://livinglfs.org/help-us-fill-the-gap-left-by-amazon-smile/) - $3,947.58 went into the LFS community through Amazon Smile donations. Amazon has now ended the program, but we have hardship grants and family camps to fund.
- [Leader of the Band / A Family Affair](https://livinglfs.org/leader-of-the-band-a-family-affair/) - Donald Connolly, born 1915, passed from Astrocytoma September 3rd, 1958. Not until 1992 would we understand LFS and the significance of his passing.
- [How the Elephant Became a Symbol of Hope for Our Living LFS Community](https://livinglfs.org/elephant-lfs-hope/) - Why does an elephant, with more than 6,600 lbs. of cells, get less cancer than a human?
- [Financial Support Available for Families Affected by High Cancer Risk During Li-Fraumeni Syndrome Awareness Month](https://livinglfs.org/financial-support-available-for-families-affected-by-high-cancer-risk-during-li-fraumeni-syndrome-awareness-month/) - March is Li-Fraumeni Syndrome Awareness Month! Living LFS will award hardship grants to families with this cancer predisposition on LFS Awareness Day, March 20.
- [5 Life Lessons From People Likely to Get Cancer](https://livinglfs.org/5-life-lessons-from-people-likely-to-get-cancer/) - Our chance of developing cancer is nearly 100%. Here are 5 life lessons we've learned and want to share with you.
- [Mutant Vs Monster: Andi Last's Tale of Li-Fraumeni Syndrome](https://livinglfs.org/mutant-vs-monster-andi-lasts-tale-of-li-fraumeni-syndrome/) - My name is Andi. That's my husband Jay in the video with me. I’m the mutant, and he’s my warrior. In March 2015, at the age of 41, I was diagnosed with breast cancer. Not long after, I learned that I have a very rare inherited disorder called Li Fraumeni Syndrome, or LFS, which makes
- [Perspective on Previving Cancer](https://livinglfs.org/perspective-on-previving-cancer/) - "I still wrestle back and forth with how I feel about my journey, but I find that most days being a previvor brings me a sense of peace I never expected. I feel normal again because I feel empowered and in control."
- [$12,000 in hardship grants to be awarded on Li-Fraumeni Syndrome Awareness Day, March 20](https://livinglfs.org/hardship-grants-awarded-lfs-awareness-day-march-20/) - LFS Awareness Day March 20th: Living LFS will award hardship grants to those financially struggling with Li-Fraumeni syndrome, a genetic cancer predisposition.
- [Key Rare Cancer Syndrome Gets An Awareness Day and Month](https://livinglfs.org/li-fraumeni-syndrome-awareness-day-and-month/) - Living LFS established March 20th, 2021 as the first Li-Fraumeni Syndrome Awareness Day, and March 2021 as the inaugural Li-Fraumeni Syndrome Awareness Month.
- [How a Family Cancer Story Became The Hope of Elephants](https://livinglfs.org/how-a-family-cancer-story-became-the-hope-of-elephants/) - A girl struggles to decide whether to be tested for the genetic mutation linked to her father's cancer. Would it be better not to know?
- [Panic Attacks](https://livinglfs.org/panic-attacks/) - "I've always tried to guard against becoming a mother who is constantly afraid and forbidding Dylan due to my fears... caused by cancer illness and loss." - Ilonka Dee
- [The Early Detective: Don’t let cancer define you](https://livinglfs.org/the-early-detective-dont-let-cancer-define-you/) - Lainie beat five primary cancers thanks to early detection. "Don’t compare your diagnosis to someone else but let it help pave your journey to survival."
- [Sandra's Story: Power from Knowledge and Hope](https://livinglfs.org/sandras-story-power-from-knowledge-and-hope/) - After facing 3 cancers herself, and her son's Rhabdomyosarcoma, Sandra shares her experience with LFS and passing along knowledge and hope to her children.
- [The Realities of LFS and Cancer: Elizabeth's Story](https://livinglfs.org/realities-of-lfs-and-cancer-elizabeths-story/) - Elizabeth's baby was diagnosed with adrenocortical carcinoma. His treatment illustrates how emotionally devastating living with Li-Fraumeni syndrome can be.
- [8 Sophisticated Ways to Donate to Charity and Reduce Your Taxes](https://livinglfs.org/donate-to-charity-reduce-taxes/) - If you regularly make large, generous donations to charity, make sure you’re getting the biggest tax break possible so your giving has even more impact.
- [2022 Living LFS Mandala](https://livinglfs.org/2022-living-lfs-mandala/) - Make a $530 donation to support Living LFS Hardship Grants and you can own a one-of-a-kind mandala being hand-drawn by the illustrious Inge Vandormael.
- [Identifying Li-Fraumeni Syndrome: Taylor's Story](https://livinglfs.org/identifying-li-fraumeni-syndrome-taylors-story/) - After her family experienced four completely different cancers, 20 year old Taylor shares how they received a diagnosis of Li-Fraumeni syndrome (LFS).
- [The Universe Had Other Plans: Lauren's Story](https://livinglfs.org/the-universe-had-other-plans-laurens-story/) - Lauren learned she was pregnant with her first baby three days after being diagnosed with Li-Fraumeni syndrome. She shares her story of LFS and family planning.
- [Stay Strong and Live Life: Hailey's Story](https://livinglfs.org/stay-strong-and-live-life-haileys-story/) - In May of 2020, I found out I was pregnant... I also found out I had a very rare cancer that I was blessed they found because of this pregnancy.
- [Li-Fraumeni Syndrome Hardship Grants 2021](https://livinglfs.org/li-fraumeni-syndrome-hardship-grants-2021/) - Living with Li-Fraumeni Syndrome (LFS) can be expensive. Living LFS awarded $530 LFS hardship grants to LFS families in need. These are their stories.
- [Fall 2021 LFS Hardship Grants: from $10K to $13,530](https://livinglfs.org/fall-2021-lfs-hardship-grants-from-10k-to-13530/) - LFS hardship grants, awarded today to families living with Li-Fraumeni syndrome, ensure that Living LFS founder Jennifer Mallory's voice continues to be heard.
- [Rethinking PINK in October: Why Andi Doesn't Do Pink and What YOU CAN DO To support Breast Cancer Awareness.](https://livinglfs.org/rethinking-pink-in-october-why-andi-doesnt-do-pink-and-what-you-can-do-to-support-breast-cancer-awareness/) - Andi Last is a breast cancer survivor with Li-Fraumeni syndrome. Here's why she doesn't do PINK in October, and REAL ways you can help breast cancer patients.
- [Rare Disease Week 2021](https://livinglfs.org/rare-disease-week-2021/) - Treva Vetter is a Registered Nurse, survivor, and patient advocate who is living with Li-Fraumeni Syndrome. Treva represented Living LFS during the Virtual Rare Disease Week on Capitol Hill, July 14-22. Treva advocated for the LFS community to staffers for her members of Congress including Senator Patty Murray, Senator Maria Cantwell, and Representative Adam Smith.
- [Thankful for Hope: Anniversaries, Lines, and Grey Hairs](https://livinglfs.org/anniversaries-lines-grey-hairs/) - Awaiting the results of yet another mammogram, Andi Last gathers feelings of hope and gratitude to help manage scanxiety - and every day of living with LFS.
- [LEAD- MDAnderson's Li-Fraumeni Syndrome Education and Early Detection Clinic](https://livinglfs.org/lead-mdandersons-li-fraumeni-syndrome-education-and-early-detection-clinic/) - MDAnderson recently announced the beginning of a clinic for patients with Li-Fraumeni Syndrome at their cancer center in Houston, Texas. The Program is called LEAD- Li-Fraumeni Syndrome Education And Early Detection. Due the risk of many cancers associated with LFS, the LEAD program offers a comprehensive screening plan to detect cancers as early as possible.
- [LEAD: MD Anderson's Li-Fraumeni Syndrome Study](https://livinglfs.org/md-andersons-li-fraumeni-syndrome-study/) - MD Anderson's Li-Fraumeni Syndrome Study is called LEAD: Li-Fraumeni Syndrome Education And Early Detection
- [Media Stories from the Li-Fraumeni Syndrome Community (Part 2)](https://livinglfs.org/media-stories-from-the-li-fraumeni-syndrome-community-2/) - Li-Fraumeni Syndrome may be rare, but the families and individuals whose lives have been affected by LFS have been featured in the media on many occasions.
- [Screening: The Toronto Protocol](https://livinglfs.org/screening-the-toronto-protocol/) - For decades, those with Li Fraumeni Syndrome have struggled with knowing they are at a higher risk for cancer. Many of these LFSers want to DO something, not just wait around for cancer to catch up to them. For years we heard that screening is the best prevention and chance to beat cancer, we hear
- [Grey's Anatomy and Li-Fraumeni](https://livinglfs.org/greys-anatomy-and-li-fraumeni/) - I was doing some work on my computer on Thursday evening when the notification on Facebook got my attention. I checked in, and saw some LFS chatter. "Anyone watching Greys Anatomy?" Apparently there was a storyline about LFS. I took a break from what I was doing and went to watch. I do not generally watch the
- [MOSAICISM in Li-Fraumeni Syndrome](https://livinglfs.org/mosaicism-in-li-fraumeni-syndrome/) - We have this question pop up frequently in our support group. What is mosaicism? On a very basic level, genetic mosaicism means a person has mixture of cells with different genetic make up. LFS Mosaics have some cells that have Tp53 mutations and some cells that do not, where as someone who inherits LFS from
- [World Rare Disease Day 2016: Li-Fraumeni Syndrome](https://livinglfs.org/world-rare-disease-day-2016-li-fraumeni-syndrome-wear-that-you-care/) - World Rare Disease Day is February 29, 2016. Living LFS is teaming up with Global Genes to raise awareness about Li-Fraumeni Syndrome and Rare Diseases. GlobalGenes.org is a patient advocacy organization for rare diseases. Their mission is to eliminate the challenges of rare disease by building awareness, educate the global community and provide critical connections and
- [Kortne's Story about Learning to Live with LFS](https://livinglfs.org/kortnes-story-about-learning-to-live-with-lfs/) - “If you were me what would you do?” Working as a nurse, I have been asked this question so many times. It wasn't until I was the one asking this same question, that I could truly identify with the countless number of emotions hidden behind it. Behind this question is so much more, it is
- [A Breast Cancer Journey of 8 Years](https://livinglfs.org/a-breast-cancer-journey-of-8-years/) - Ilonka Dee has Li-Fraumeni Syndrome, a predisposition to developing cancer. She was diagnosed with breast cancer as her son Kaj was treated for neuroblastoma.
- [Let’s talk about sex, baby](https://livinglfs.org/lets-talk-about-sex-baby/) - Fannie shares her experience of intimacy, sex and the importance of supportive relationships while living with Li-Fraumeni Syndrome.
- [Mental Breaks and Living LFS: Fannie Shares Her Conference Experience](https://livinglfs.org/mental-breaks-and-living-lfs-fannie-shares-her-conference-experience/) - In April 2018, Fannie attended the LFSA REACH International Conference in Toronto. She shares her experience and the impact it has made on her coping with LFS since she's been home. We are grateful to Fannie for her time and efforts making the Living LFS Exhibit Table a perfect representation of our group. What we
- [Working with LFS: When Your Brain Gets in the Way](https://livinglfs.org/working-with-lfs-when-your-brain-gets-in-the-way/) - Living with LFS is tough. Working with cancer is tough. Working with LFS has many unique issues. Fannie shares her experience with Brain cancer, working and living LFS. It is hard. It is real. It is possible.
- [Pre-Camp Considerations](https://livinglfs.org/pre-camp-considerations/) - Fannie Lemay describes why events like the Living LFS Family Camp, although intimidating in some ways, are so important to people with Li-Fraumeni Syndrome.
- [Mental health is dope y'all](https://livinglfs.org/mental-health-is-dope-yall/) - by Fannie Lemay – When I was diagnosed with Li-Fraumeni syndrome in 2016 and then three weeks later with stage 3 brain cancer, I felt lost and desperate. I just received a death sentence, not once, but twice in a month. I was devastated. “How am I going to tell people?” was my first thought.
- [Beauty in an Unlikely Place: Fannie Remembers Her Mother's Breast Cancer Journey](https://livinglfs.org/beauty-in-an-unlikely-place-fannie-remembers-her-mothers-breast-cancer-journey/) - Fannie learned some very powerful lessons from her mother through her breast cancer battles. She learned about self awareness, how to advocate and how she chooses to live despite living with LFS. Thank you Fannie for sharing your memories of your mother and her strength with us. My mom never knew she had Li-Fraumeni Syndrome.
- [LFS MRI 101](https://livinglfs.org/lfs-mri-101/) - Magnetic Resonance Imaging. MRI. MRIs use powerful magnets and radio waves to create images of the body. The benefit to people with LFS is that there is no radiation involved when generating these images. X-rays, mammograms and CTs all utilize varying degrees of ionizing radiation that penetrates the cells to give off an image. The
- [Ilonka: Thoughts on LFS and Bravery](https://livinglfs.org/illonka-thoughts-on-lfs-and-bravery/) - Imagine not only having cancer at the same time as your child, but multiple cancers. Bravery looks different to Illonka, after losing her son Kaj to cancer. Here is her story.
- [Getting a Li-Fraumeni Syndrome Diagnosis](https://livinglfs.org/getting-a-li-fraumeni-syndrome-diagnosis/) - Real stories from the Li-Fraumeni syndrome patient community about the experience of being diagnosed with LFS, a predisposition to developing a wide range of cancers.
- [Li-Fraumeni in the movies](https://livinglfs.org/li-fraumeni-in-the-movies/) - by Andi Last - Sean Hannity and Hercules have made Travis Tritt the first person to ever say the words "Li-Fraumeni Syndrome" in a major motion picture. Back in 2014, LFS was used in a plot line on the TV show, Grey's Anatomy. Ann Ramer recapped the episode here. For a condition as rare as ours,
- [How to Do a Breast Self Exam](https://livinglfs.org/how-to-do-a-self-breast-exam/) - Trishia, a multiple breast cancer survivor, mutant, and advocate shows us how she performs self breast exams.
- [The Elephant in the Room- Dr. Schiffman takes on TP53](https://livinglfs.org/the-elephant-in-the-room-dr-schiffman-takes-on-tp53/) - Perhaps the most dynamic speaker of the 2013 Li- Fraumeni Syndrome Conference in Boston was Dr. Joshua Schiffman from the Huntsman Clinic in Utah. I have several LFS friends who see Dr. Schiffman and his team and he comes highly recommended. I heard of his passion for p53 and helping our community. I was eager
- [Sarcoma in Li-Fraumeni Syndrome 2018](https://livinglfs.org/sarcoma-in-li-fraumeni-syndrome-2018/) - 1969, SOFT TISSUE SARCOMAS, BREAST CANCER- A FAMILY SYNDROME?In 1969, Dr. Joseph Fraumeni and Dr. Frederick Li were working at the National Institutes of Health when they noticed four families with two children who had sarcomas. Three families had two siblings, one family had two cousins with sarcomas. Beyond that rare occurrence, 3 of the
- [Just Keep Sluggin! Brandi's Sarcoma Update.](https://livinglfs.org/just-keep-sluggin-brandis-sarcoma-update/) - A few years ago, Brandi shared her experience of sarcoma with us. In 2009, she was only 29, 5 months pregnant with her daughter when she noticed a lump on her thigh. Sarcoma. Only about 1% of all cancers are sarcomas. Sarcomas can be found in any connective tissue, bone, blood vessels, fat, muscles or
- [Mosaic Mutants](https://livinglfs.org/mosaic-mutants/) - Genetics are very complicated. There are so many factors that influence how we become who we are on the cellular level and beyond. A good friend of mine always points out- there are many ways to make a family. Those of us in the support group learned that as we have become a family of
- [The New LivingLFS.org](https://livinglfs.org/the-new-livinglfs-org/) - For those of you who are new, welcome, we are so happy you've joined us! For those who have been with us, we're so glad you're still here. We hope you're weathering this strange time with strength and togetherness. By way of re-introduction, we are Living LFS. We encourage, empower, and educate those living with
- [Should we ((HEART)) CoQ10?](https://livinglfs.org/should-we-heart-coq10/) - A friend with LFS recently asked me about CoQ10 supplements and their anti cancer effects. Supplements are yet to be regulated, certified or otherwise cross checked in the United States. The FDA considers vitamins to be nutritional supplements and does not recommend doses or support any health claims made by manufacturers. There isn't a lot
- [Metformin and LFS](https://livinglfs.org/metformin-and-lfs/) - Metformin, a diabetes medication used to help control blood sugar, could help prevent cancer. For people with LFS, repurposing this medication shows promise.
- [Finding Fast Friends on Day One of Living LFS Family Camp](https://livinglfs.org/finding-fast-friends-on-day-one-of-living-lfs-family-camp/) - Joni Allred talks about how it doesn't take long to develop deep, meaningful relationships with campers at the Living LFS Family Camp.
- [LFS in the News: PBS NewsHour Report on Elephants, Cancer, and TP53](https://livinglfs.org/lfs-in-the-news-pbs-newshour-report-on-elephants-cancer-and-tp53/) - Elephant genes hold big hopes for cancer researchers: Elephants have 100 times more cells in their bodies than humans, which should make them far more vulnerable to cancer than we are. But less than 5 percent of elephant deaths are linked to cancer, which researchers credit to the animals’ abundance of cell-suppressing genes -- genes
- [Some p53 Mutations are "Nonsense"](https://livinglfs.org/some-p53-mutations-are-nonsense/) - Most people with Li Fraumeni Syndrome know they have a mutation. Some can even tell you at which codon their mutation occurred(don't feel bad if you had to look yours up-I had to). I'm a Gly245Ser- it's a hot spot binding domain within the tp53 tumor suppressor gene. I have an Adenine where I should
- [Mutants Vs. Radiation: Trying to Understand Radiation in LFS](https://livinglfs.org/mutants-vs-radiation-trying-to-understand-radiation-in-lfs/) - Generally, everyone should be cautious around radiation, but also realize radiation is all around us. When we are diagnosed with LFS, one of the first things we are cautioned is to avoid radiation. So what exactly does this mean? Should we avoid dental x-rays? What about the airport scanners? Do cell phones cause cancer? Can we eat
- [Meet Katrina: BREAST CANCER, We Need More Than Pink.](https://livinglfs.org/meet-katrina-breast-cancer-we-need-more-than-pink/) - Let's face it, WE ARE ALL AWARE BREAST CANCER EXISTS we need to support research to STOP cancer from killing.
- [LFS Childhood Cancer Awareness: Choroid Plexus Carcinoma](https://livinglfs.org/lfs-childhood-cancer-awareness-choroid-plexus-carcinoma/) - Parents of children with Li-Fraumeni Syndrome and Choroid Plexus Tumors share their experiences with this rare cancer.
- [Thank You from Jen.](https://livinglfs.org/thank-you-from-jen/) - 5 years ago, I learned my Breast Cancer metastasized. I was terrified, angry, but not surprised. A close group of friends I met through the LFS Support Group reassured me that this was not the end, it was a beginning. We met for the first time in person November 2013, in the bar of the
- [Connecting the Beautifully Twisted: D'Ana Reed International Scholarship](https://livinglfs.org/connecting-the-beautifully-twisted-dana-reed-international-scholarship/) - One Year ago today, we lost a good friend. D'Ana Reed would poke in on the Facebook support group, but she preferred to be with people. She would pack Lola, her trusty blow up mattress in the back of her car and head out to support friends, family and mutants in need. Where Gabby landed
- [Perspective:P53 and Me in the New England Journal of Medicine](https://livinglfs.org/perspectivep53-and-me-in-the-new-england-journal-of-medicine/) - Living with LFS has many challenges, stresses, and choices. We do not get to choose our DNA or IF we will get cancer. We can choose whether or not to screen or make lifestyle choices that affect our health. In a recent perspective article in the New England Journal of Medicine, Shekinah N.C. Elmore, M.D. shares
- [A Kick-Ass Kinda Community](https://livinglfs.org/a-kick-ass-kinda-community/) - In April 2018, Living LFS awarded 14 travel scholarships to members of our support group to help them attend the LFSA 2018 REACH International LFS Symposium at SickKids Hospital in Toronto, Canada. These scholarships were provided by years of fundraising through T-shirt fundraisers and generous donations to our Friends of Living LFS program. Linda and
- [Living LFS: Together in Toronto 2018](https://livinglfs.org/living-lfs-together-in-toronto-2018/) - Living LFS was fortunate to attend the Li-Fraumeni Syndrome Association's REACH 18 International Symposium in Toronto, Canada from April 25-29. Board members and support group members gathered at the Living LFS exhibition table, generously provided by the LFSA, between presentations by over 30 of the world’s foremost physicians and scientists in the fields of cancer
- [LFS in WOMEN](https://livinglfs.org/lfs-in-women/) - Women with LFS have unique health issues.
- [World Cancer Day 2018- What Mutants Wish you Knew About LFS.](https://livinglfs.org/world-cancer-day-2018-what-mutants-wish-you-knew-about-lfs/) - Years ago, we asked our support group members, What is one thing you wish everyone knew about LFS? As always, the answers were heartfelt, emotional, and representative of the hardships we face living with a hereditary cancer syndrome. Since LFS is rare, knowledgeable doctors are tough to find, especially close by home. Since early detection
- [Diet and Living with LFS](https://livinglfs.org/diet-and-living-with-lfs/) - It's a New Year. Resolutions, diets, everywhere you look are ads about how to get healthier. When someone is diagnosed with cancer or Li-Fraumeni Syndrome, usually one of the first questions they ask is : Can I change my diet to help fight or prevent cancer? The short answer is - sure. Of course. Just
- [How To Raise Money To Get To An Event](https://livinglfs.org/how-to-raise-money-to-get-to-an-event/) - So a big event is coming up that you really want to attend, maybe it's in another state or another country, and your bank account can't quite handle getting there and staying there. Y'know, like The First Annual Living LFS Family Camp happening October 10-13, 2019 at Camp Mak-A-Dream in Gold Creek, Montana.Yeah, that big
- [Holiday Angels](https://livinglfs.org/holiday-angels/) - The holidays can be bittersweet when living LFS. We are grateful for each day, each memory, but we also experience an unfair helping of loss. On December 16, 2016, the Quist family surrounded 13 year old Josh as he earned his angel wings after enduring months of treatment, multiple surgeries and a clinical trial for
- [Variants of Uncertain Significance(VUS) in LFS](https://livinglfs.org/variants-of-uncertain-significance-vus-in-lfs/) - Few things are more frustrating than looking for answers and getting the response- we don't know. Sometimes, a person agonizes over the decision to be tested for a hereditary cancer syndrome like LFS, finally getting tested just to know for sure. Unfortunately the results aren't always a clear cut; Yes, you have LFS or No,
- [Joining the Li-Fraumeni Syndrome Support Group on Facebook](https://livinglfs.org/lfs-support-group-on-facebook/) - Our private Living LFS Li-Fraumeni Syndrome Support Group continues to grow! For a syndrome that is constantly said to be so rare we are up to over 800 members strong! LFS is hard but you are not alone! The admins for the group try to connect with people before we allow them into the group.
- [Genetic Counseling for Li-Fraumeni Syndrome.](https://livinglfs.org/genetic-counseling-for-li-fraumeni-syndrome/) - November 9, 2017 was the first Genetic Counseling Awareness Day! Andi Last met up with Wendy Kohlmann, MS, CGC, a licensed genetic counselor at The University of Utah Huntsman Cancer Institute to explain the value of a genetic counselor after a diagnosis of Li-Fraumeni syndrome. Wendy discusses the importance of life long meetings with genetic counselors when you have
- [In Memory of D'Ana Reed. Founder. Mutant. Sister. Friend.](https://livinglfs.org/in-memory-of-dana-reed-founder-mutant-sister-friend/) - D'Ana and her sister Courtney helped found Living LFS. They soon became our mutant sisters as we worked to bring those living LFS together. D'Ana lived fully and completely and shared her positive energy and laughter with anyone she ran across from childhood friends, to chemosabes(chemo friends) to her mutant family. The way D'Ana
- [Using Family Loss to Sing Awareness of LFS for Mo and Kerry](https://livinglfs.org/using-family-loss-to-sing-awareness-of-lfs-for-mo-and-kerry/) - My name is Kathy Higgins. I have lost 4 family members to LFS. KERRY Kerry was first diagnosed with cancer at the age of 12, an osteosarcoma in her thigh. She received chemo and had multiple operations on her leg. Kerry also had several small cancer issues over the years, skin spots on
- [2016 Living LFS Limited Edition Elephant T-Shirt Fundraiser- ENDS Oct. 14, 2016](https://livinglfs.org/2016-living-lfs-limited-edition-elephant-t-shirt-fundraiser-ends-oct-14-2016/) - This year's one of a kind T-shirt for LFS awareness features the majestic elephant. Elephants signify strength, power, wisdom, and loyalty. For the LFS community, the elephant is also a symbol of HOPE. YOU CAN GET YOUR SHIRT HERE LFS is linked to a mutation in the TP53 gene, which makes the p53 protein. This
- [Raising Two Children with Cancer, The Roberts Family's story of living LFS](https://livinglfs.org/raising-two-children-with-cancer-the-roberts-familys-story-of-living-lfs/) - Claire Roberts shares their family's story of not only one, but two children facing cancer and learning some of the challenges families with Li-Fraumeni Syndrome face along the way. Despite it all, their family is stronger, loves more and finds hope and compassion in new places with two amazing childhood cancer warriors. This is how
- [Positively Living LFS, It's NOT a Death Sentence.](https://livinglfs.org/positively-living-lfs-its-not-a-death-sentence/) - Odds are that Li-Fraumeni Syndrome is THE most devastating hereditary cancer syndrome that you have never heard of, unless of course you know one of our families or you have had the misfortune of being recommended for genetic testing for a TP53 mutation. Odds are also that if you ran across an LFS family on
- [Genetic Counseling in LFS.](https://livinglfs.org/genetic-counseling-in-lfs/) - What is Genetic Counseling? Genetic Counselors are a group of professionals with a Master's level degree who work in clinics, hospitals, public health and private practice. According to the information by the National Society of Genetic Counselors at NSGC.org: Genetic counseling is the process of helping people understand and adapt to the medical, psychological
- [Li-Fraumeni Syndrome- Cancer in Olympic Proportions. The Story of Brazil's p53 Mutation.](https://livinglfs.org/li-fraumeni-syndrome-cancer-in-olympic-proportions-the-story-of-brazils-p53-mutation/) - The 2016 Summer Olympics are underway in Brazil. We watch as the world comes together in Rio to celebrate and honor feats of strength, endurance and quite a bit of luck. Some athletes do their best to make their own luck, while others acknowledge the hereditary gifts that enable them to compete athletically at such
- [Regular Screening In LFS helps Survival](https://livinglfs.org/regular-screening-in-lfs-helps-survival/) - Video credit: CTV Toronto: Sick Kids Cancer genetics Program At age 3, now 14 year old Alaya was diagnosed with Leukemia. 10 years later, she again faced a second battle with leukemia and a second bone marrow transplant from her brother Jayke. Genetic testing through the Sick Kids Cancer Genetics Program in Toronto revealed she
- [MO Songs for KERRY Fundraiser for Li-Fraumeni Syndrome](https://livinglfs.org/mo-songs-for-kerry-fundraiser-for-li-fraumeni-syndrome/) - James Higgins lost his dad, his sister and 2 daughters to LFS cancers. Cancer came after him twice. This is his story and how he lives with LFS. This year will be the 3rd Fundraiser held in honor of his daughters Maureen and Kerry, the Mo Songs for Kerry Event. These are James' words, he
- [Living with Tough LFS Decisions](https://livinglfs.org/living-with-tough-lfs-decisions/) - There really are no easy decisions where cancer is concerned. It's usually an exercise in choosing between a tumor and a hard place. Some people find it is easier for them to just listen to the doctor and follow the guidance to a T, others will spend gruelling hours doing their own research and soul
- [COTI-2 - Big Excitement surrounding a SMALL Molecule.](https://livinglfs.org/coti-2-big-excitement-surrounding-a-small-molecule/) - One of the most exciting presentations at the REACH 16 International LFS Conference was information presented on COTI-2, a novel small molecule that helps repair some mutant p53. Dr. Wayne Danter is the Co-Founder, President and CEO of Critical Outcome Technologies, Inc., an Ontario based biopharmaceutical company that works to "be instrumental in saving thousands
- [A Father's Day Tribute](https://livinglfs.org/a-fathers-day-tribute/) - Almost three years ago, the Peytavin family's journey with cancer began. It is often said that when a family member gets cancer, the family gets cancer. In Li-Fraumeni Syndrome families, this is often more literal. Fortunately, after surgery, chemotherapy and a clinical trial, Lance Peytavin is doing well and was in for the surprise of
- [The REACH 2016 International Li-Fraumeni Syndrome Conference](https://livinglfs.org/the-reach-2016-international-li-fraumeni-syndrome-conference/) - On Wednesday, June 1st, 2016 the LFS family gathered at the Sheraton Capitol Square in Columbus, Ohio. This family includes people with TP53 mutations, those who love someone with a TP53 mutation and the researchers and doctors who have spent decades helping us live LFS. The Li-Fraumeni Syndrome Association graciously organized and sponsored the event
- [MRIs and Kids](https://livinglfs.org/mris-and-kids/) - Since Li-Fraumeni Syndrome cancers can pop up just about anywhere in the body and at any age, screening can be a bit of a challenge. There are studies currently being done to see if whole body MRI is reasonable. Preliminary studies show that people with LFS do tend to grow lots of lumps and bumps
- [In Memory of Andrea- Faith, Trust, and Pink Lemonade Cupcakes](https://livinglfs.org/in-memory-of-andrea-faith-trust-and-pink-lemonade-cupcakes/) - Many of us met Andrea at an LFS conference in Boston a few years ago. She and her mother Kim are well known within our Li-Fraumeni Syndrome support community. They are also known as having a particularly rough journey, even for mutants. Shortly after that conference, Andrea travelled between multiple hospitals, in search of a
- [Kelilah's Keys to "Beating" Cancer and other Crap](https://livinglfs.org/kelilahs-keys-to-beating-cancer-and-other-crap/) - Kelilah Vardah gives us her thoughts on the Living LFS question: "Do some of you think you can beat cancer with pure will (and medicine of course)." Short answer: In a way, yes. Long answer: Beating Cancer isn't easy and there is no clear pathway to survival. Some of the happiest and most positive people
- [Genetic Testing and Discrimination](https://livinglfs.org/genetic-testing-and-discrimination/) - One big concern that many have when considering genetic testing for hereditary conditions like Li-Fraumeni Syndrome is if they will be discriminated against by insurance companies or employers. This short video from Ambry Genetics with Genetic Counselor Carin Espenschiel, MS, CGC talks about this concern and laws that are in place(GINA) to protect individuals.
- [The p53 Song by Roland Houben](https://livinglfs.org/the-p53-song-by-roland-houben/) - Who knew there was a song about p53? Many thanks to Roland Houben for this catchy tune about our favorite tumor suppressor. Post by Living LFS.
- [Yasmin Shares about the 3rd Annual LFS Conference in Brazil](https://livinglfs.org/yasmin-shares-about-the-3rd-annual-lfs-conference-in-brazil/) - My Experience in My Second LFS Meeting by Yasmin Abdalla Shaaban So, I will talk a little about my personal perception on the last 3rd Annual Brazilian Li-­Fraumeni Syndrome Family Meeting that happened on March 30th of 2016. I’ll start explaining that I don’t have the mutation that causes the syndrome, but my mother and
- [The BEST thing I learned by Living LFS is...](https://livinglfs.org/the-best-thing-i-learned-by-living-lfs-is/) - It is difficult to imagine anything good coming from being diagnosed with Li-Fraumeni Syndrome. Yet as our members remind us, the good is in what you choose to see. Power and knowledge can be harnessed from the diagnosis. We asked our support group members what was the BEST thing they learned by living LFS. There
- [Scanxiety Rescue](https://livinglfs.org/scanxiety-rescue/) - Living LFS means extra scans. Preventative scans. Screening Scans. Treatment Scans. Follow-up scans. Annual Scans. Quarterly scans. This is after an undue amount of time fighting (sorry ADVOCATING) to GET scans ordered or covered in the first place. Holy Scans Batman. My scanxiety is tingling. With great scans, comes great scanxiety. Rationally you tell yourself
- [MD Anderson Cancerwise: Li-Fraumeni Syndrome survivor: 'Don’t let cancer define you'  ](https://livinglfs.org/md-anderson-cancerwise-li-fraumeni-syndrome-survivor-dont-let-cancer-define-you/) - Lainie Jones has had five primary cancers, as well as Li-Fraumeni syndrome. But she's stayed optimistic and refuses to let cancer control her life. Source: Li-Fraumeni syndrome survivor: 'Don’t let cancer define you'
- [Dr. Emilia Modolo Pinto Answers Questions About Cancer Predisposition Genes and Childhood Cancer in LFS and Beyond.](https://livinglfs.org/dr-emilia-modolo-pinto-answers-questions-about-cancer-predisposition-genes-and-childhood-cancer-in-lfs-and-beyond/) - Research articles often are difficult for the average person to understand. One of our goals at living LFS is to help make this information easier to understand so everyone can benefit from the exciting advances in science and medicine. In November, The New England Journal of Medicine published an article about childhood cancer, hereditary cancer
- [Li-Fraumeni Syndrome, A Class of its Own.](https://livinglfs.org/li-fraumeni-syndrome-a-class-of-its-own/) - [pdf-embedder url="https://livinglfs.org//wp-content/uploads/2016/01/LFS-Final-Project-Jennifer-Mallory-copy.pdf"] A few months ago, I had the opportunity to take an online course entitled Introduction to the Science of Cancer offered by the Ohio State University through the online education app called Coursera. I was excited to see what the course material contained. As someone with a hereditary cancer syndrome, I feel like
- [Living LFS Travel Scholarship Fund for #GivingTuesday](https://livinglfs.org/living-lfs-travel-scholarship-fund-for-givingtuesday/) - The LFS community is extremely rare. We have a rare hereditary cancer syndrome with increased risk of all kinds of rare cancers. In our support groups, we share jokes about some of the hurdles we run across and support each other. We celebrate the ups and share virtual hugs for the hard times. We confide
- [Living LFS T-Shirt Fundraiser](https://livinglfs.org/living-lfs-t-shirt-fundraiser/) - An important part of our mission is to raise awareness for and connect those who are living LFS. Just launched in November is our T-shirt fundraiser. Profits will help us bring together and connect families who have Li-Fraumeni Syndrome. Living with LFS can be very medically busy and financially difficult. Emotionally it can feel isolating
- [Welcome to Living LFS!](https://livinglfs.org/welcome-to-living-lfs/) - 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
- [Strings, Smiles and the Whispering Voice. Lisanne and Elise's Story](https://livinglfs.org/strings-smiles-and-the-whispering-voice-lisanne-and-elises-story/) - Lisanne’s grandfather, three of her aunts, an uncle and a nephew – all of them died from cancer. Her daughter got a brain tumour at the age of 1.5 years. They are a Li-Fraumeni Syndrome family. They are living LFS. This month marks the 5 year anniversary since Lisanne's daughter was diagnosed with cancer. ”I
- [Marjorie- 18 Years of Surviving. Part 1.](https://livinglfs.org/marjorie-18-years-of-surviving-part-1/) - Surviving Childhood Cancer can leave quite an impact. Not only are there long term health effects from intense treatments, there are often emotional scars left. Children undergoing treatment miss out on many normal activities and this can shape how they approach the future. Sometimes the things that childhood cancer survivors look forward to the most
- [Brian Ries- No Matter the Odds, Keep Fighting](https://livinglfs.org/brian-ries-no-matter-the-odds-keep-fighting/) - Brian Ries- No Matter the Odds, Keep Fighting. About a month ago, I reached out to the support group to see if anyone was willing to share their story of childhood cancer with us here. Brian replied right away and sent me several photos from his first battle with cancer, Rhabdomyosarcoma when he was 9
- [Four Stories of LFS and Pediatric Adrenocortical Carcinoma, Rare Hope](https://livinglfs.org/four-stories-of-lfs-and-pediatric-adrenocortical-carcinoma-rare-hope/) - -Adrenocortical tumors are very rare, seen in about 0.2 percent of all childhood cancers.-More girls are affected by adrenocortical carcinoma than boys.-It is usually seen in children between the ages 1 and 4 years old-The tendency to develop adrenocortical tumors may be inherited, like with LFS. These are the stories of 4 young ladies who
- [MRI Contrast Safety Check](https://livinglfs.org/mri-contrast-safety-check/) - Mutants are sensitive to radiation. We avoid radiation when possible because ionizing radiation causes breaks in DNA that our mutant p53 is not good about repairing. Due to this, there are several studies that are looking into whole body MRI as a screening tool for LFS cancers. A huge benefit to MRI is that is
- [PROMPT Study could Use LFS Participants!](https://livinglfs.org/prompt-study-could-use-lfs-participants/) - One of the big complaints with rare syndromes is that there aren't enough clinical studies to address our needs. PROMPT is a study that combines data from not just families with LFS, but from many different mutations that are linked to cancer. This is significant to our community because by finding likenesses and differences between
- [Sluggin' it Out With Sarcoma: Brandi's Story](https://livinglfs.org/sluggin-it-out-with-sarcoma-brandis-story/) - Brandi was a young woman about to embark on the crazy journey into parenthood when she was sideswiped with a rare cancer diagnosis. Sarcoma. Only about 1% of all cancers are sarcomas. Sarcomas can be found in any connective tissue, bone, blood vessels, fat, muscles or nerves. Many sarcomas(like Brandi's) present as a painless lump
- [Tumor Humor- Screwed Again](https://livinglfs.org/tumor-humor-screwed-again/) - Living with LFS can leave you feeling like you've lost your mind. Keeping up with doctor's appointments, screenings, checking out weird lumps or bumps and finally keeping sane through it all. Sometimes the ridiculous happens, or the ridiculously weird and you just have to share it. Introducing Tumor Humor- a new segment of our blog where
- [Dr. Frederick Pei Li (May 7, 1940 – June 12, 2015)](https://livinglfs.org/dr-frederick-pei-li-may-7-1940-june-12-2015/) - In 1967, Dr. Li, Dr. Fraumeni and Dr. Miller were chatting socially at the NIH. In the course of conversation, a particular family popped up. This family had three small children who had soft tissue sarcomas, a very rare type of tumor. When Dr. Li talked to the family more, they found other cancers in
- [Primed for Cancer with Pan Pantziarka](https://livinglfs.org/primed-for-cancer-with-pan-pantziarka/) - Cancer is a multi-step process. For every person that says "such and such" causes cancer, there is another person who says - I have eaten/smoked/used/been exposed to "such and such" and I don't have cancer. People with LFS know they are at higher risk of developing cancer because they have a mutation in the TP53
- [Help Living LFS through Amazon Smile](https://livinglfs.org/help-living-lfs-through-amazon-smile/) - Now you can help support us as we support those Living LFS through Amazon Smile. By choosing Living LFS, Amazon Smile will donate a portion of the price of eligible purchases to our organization. Thank you for Supporting Living LFS! Living LFS Amazon smile
- [LFS Progress Report from The Wyss Family Symposium](https://livinglfs.org/lfs-progress-report-from-the-wyss-family-symposium/) - I had the good fortune of attending the Wyss Family Hereditary Brain Tumor Symposium in Columbus hosted by Nationwide Children's Hospital. While most people would not consider listening to geneticists, researchers, oncologists and other doctors talk about some pretty technical things relative to cancer for a day and a half, it was easily the best
- [Gray Matters- Brain Tumors and Li-Fraumeni Syndrome](https://livinglfs.org/gray-matters-brain-tumors-and-li-fraumeni-syndrome/) - In 1969, Dr. Frederick Li was having a casual conversation with a couple of colleagues at the National Cancer Institute. He became intrigued by hearing of a family who had 3 young patients with rare soft tissue sarcomas. This cancer was so rare- it was estimated at the time only 1 person per 100,000 would
- [Battling the Sharks](https://livinglfs.org/battling-the-sharks/) - I have many phrases that I use to keep myself emotionally grounded. Some of these are not likely to be statements that others would find helpful: "It is not a problem until it is a biopsy confirmed problem," comes most immediately to mind. However, "Battle the shark closest to the boat" might be useful in a more general context
- [The Shark Closest to the Boat](https://livinglfs.org/the-shark-closest-to-the-boat/) - My husband laughs that I often mix up my idioms. It's not rocket surgery I tell him. A few years ago I had a sarcoma removed from my arm. It was a grape sized white lump with a bluish black center. The surgeon who removed it thought I was being overly cautious, yet I explained
- [Awareness: Colorectal Cancer and LFS](https://livinglfs.org/awareness-colorectal-cancer-and-lfs/) - March is Colorectal Cancer Awareness Month. Although colon and rectal cancers(CRC) are not classified as core LFS cancers(Brain, Breast, Sarcoma and Adrenal), we are seeing more and more of these malignancies in those with TP53 mutations. In 2006, Researchers from the Department of Internal Medicine at Brigham and Women's Hospital in Boston, Massachusetts published an
- [A Tribute to Karly-](https://livinglfs.org/a-tribute-to-karly/) - On February 14, the LFS community lost one of our family. Karly Hurst was well known within the LFS support group for her positive attitude and her spunk. Her sister Vicki wrote me about her service, "it was a lovely send off, a white carriage with white horses, friends read stories about her in
- [Participating In A Study: Deb Shares her Story and About her Trip to NIH](https://livinglfs.org/participating-in-a-study-deb-shares-her-story-and-about-her-trip-to-nih/) - The day was warm, which was quite surprising because Bethesda had just gotten 7 inches of snow the day before. My flight out of Greensboro went smoothly, and I found myself sitting on a cold concrete bench waiting for a shuttle to the NIH. The sun beat down on my back as the dripping sounds
- [Rare Diseases Day 2015- What People with LFS Want You to Know](https://livinglfs.org/rare-diseases-day-2015-what-people-with-lfs-want-you-to-know/) - Rare Diseases Day started several years ago as an awareness campaign built on the idea that there is strength in numbers. There is power in numbers and scientific studies are supported by data that is generated by large numbers of participants. However, this is just not always possible in rare disease world. Organizations such as Global Genes Project and Rarediseasesday.org are working
- [Chatting With Dr. Robson About the PROMPT Study](https://livinglfs.org/chatting-with-dr-robson-about-the-prompt-study/) - by Ann Ramer I had the opportunity to visit with Dr. Mark Robson this week when I travelled to NYC to follow up with my son's orthopedic surgeon. Along with Dr. Ken Offitt, Dr. Robson is the Principal investigator at MSKCC for a collaborative genetics study. Also participating are Dana Farber (Dr. Judy Garber), The Mayo Clinic
- [Living LFS: Research with Ann](https://livinglfs.org/living-lfs-research-with-ann/) - I am fairly new to LFS, by many peoples standards, only learning of my family's genetic problem in 2011. We all understand that this knowledge is life altering, and for most, it is devastating information to come to terms with. My journey in this regard has been no different. I would not suggest to anyone that discovering
- [Dana Farber's Li-Fraumeni Syndrome Whole Body MRI Study](https://livinglfs.org/dana-farbers-li-fraumeni-syndrome-whole-body-mri-study/) - http://www.dana-farber.org/uploadedFiles/Library/adult-care/treatment-and-support/centers-and-programs/cancer-genetics-and-prevention/li-fraumeni-whole-body.pdf
- [Twelve Months of LFS](https://livinglfs.org/twelve-months-of-lfs/)
- [Tonight's TOP 10 list...You might have LFS if...](https://livinglfs.org/tonights-top-10-list-you-might-have-lfs-if/) - LFS is hard to explain to the average person out there, who simply cannot fathom the things that we face and are required to consider with a hereditary cancer syndrome. However, there is a fantastic private group of over 300 mutants from all over the world on Facebook who do understand. Mention a challenge that
- [Portland Mutant Meeting Review](https://livinglfs.org/portland-mutant-meeting-review/) - At 6pm on Friday, October 17th, 2014, mutants gathered in the Pine Room at the Embassy Suites in Portland, Oregon. As they munched on crudités and exchanged hugs, laughter spilled out into the hallway. While most would find the subject of hereditary cancer to be anything but laughable, this group of cancer fighting warriors
- [Dr. Ribeiro Speaks to Living LFS in Portland](https://livinglfs.org/dr-ribeiro-speaks-to-living-lfs-in-portland/) - On October 18, 2014, Dr. Raul Ribeiro of St. Jude's Research Hospital addressed a meeting of those with Li Fraumeni Syndrome in Portland, Oregon. Dr. Ribeiro has been honored with many awards and works tirelessly to ease the burden of cancer on children around the world. He leads many research efforts at St. Jude, spearheads
- [LFS- A Genetic Counselor's Perspective](https://livinglfs.org/lfs-a-genetic-counselors-perspective/) - Thank you for giving me an opportunity to introduce myself to this very important group. My name is Carly, and I have been a genetic counselor for 10 years. My interest in cancer genetics started in graduate school at Brandeis University. After graduating, I worked in several different areas of genetics before I was
- [Registration Open for Portland Mutant Meeting](https://livinglfs.org/registration-open-for-portland-mutant-meeting/) - Registration is open for the Mutant Mixer on 10/17 and the Meeting on 10/18 CLICK HERE TO REGISTER Please Join the members of Living LFS and other mutants to gather and chat about the challenges of Li Fraumeni Syndrome. We will share our stories, experiences and strength!
- [LFS in the Family](https://livinglfs.org/lfs-in-the-family/) - The other day in the Facebook Family and Friends Support Group, a woman from Brazil shared that while her brother tested positive for LFS, he did not consider it a death sentence, because their mother had beaten cancer 5 times. I thought about how many people in our group have benefitted by sharing our experiences, particularly
- [Have you hugged a MUTANT today?](https://livinglfs.org/have-you-hugged-a-mutant-today/) - It's HERE! Our first Living LFS Fundraiser! We designed a fun T-shirt that embraces our Mutanthood! Click on the picture or link below to go to the Booster site! Grab your shirt while you can- the sale ends September 11, 2014. https://www.booster.com/livinglfs In preparation for our first Mutant Meeting in Portland, Oregon this October 17-18,
- [Living LFS Mutant Meeting in Portland, Oregon October 17-18, 2014](https://livinglfs.org/living-lfs-mutant-meeting-in-portland-oregon-october-17-18-2014/) - Exciting things are happening at Living LFS! We have officially incorporated as an organization and are working towards filing for non profit status. As our first official act as Living LFS- we are organizing a Mutant Meeting in Portland Oregon! Please join us October 17-18 at the Portland Airport Embassy Suites to meet others who
- [NIH LFS Study](https://livinglfs.org/nih-lfs-study/) - The National Institutes of Health(NIH) is an agency of the United States Department of Health and Human Services. Located in Bethesda, Maryland, the NIH has been actively involved in LFS research before it was even called Li Fraumeni Syndrome. The NIH operates on a budget from Congress and uses those funds to perform research on
- [Choosing the best ALTERNATIVES with LFS](https://livinglfs.org/choosing-the-best-alternatives-with-lfs/) - At some point during the cancer journey, most people wonder about alternative treatments. Whether it's because conventional treatments fail or side effects are drastically affecting quality of life, many times cancer patients and family members want to know more about alternative medicine.What are "alternative" treatments? What's the difference between Alternative, Complementary and Integrated Medicine? Do
- [International Sarcoma Kindred Study (ISKS)](https://livinglfs.org/international-sarcoma-kindred-studyisks/) - In honor of July being Sarcoma Awareness Month, I'd like to tell you about an initiative that makes a difference for those with sarcoma, especially those living with Li Fraumeni Syndrome. Five years ago, an Australian researcher and the family of Kate Boyson who died only 5 months after being diagnosed with sarcoma joined forces
- [An Elephant of a Journey](https://livinglfs.org/an-elephant-of-a-journey/) - Elephants are known for their great size, their tough skin and their impressive memory. They are social creatures where multiple family units come together to socialize and help each other survive. They have an impressive self awareness and empathy for others. It is almost as if they are Living LFS. Recently it was discovered that
- [Finding Community in the LFS Community](https://livinglfs.org/finding-community-in-the-lfs-community/) - There have been 2 conferences in the past 5 years that included people living with LFS. As inspiring as it was to learn more about the syndrome, for many the most impact was felt in the opportunity to meet and talk with others who know what it is like to live with a hereditary cancer
- [Finding Support for LFS](https://livinglfs.org/finding-support-for-lfs/) - Living with LFS is a full time job. Many of us could be awarded honorary degrees in genetics, medicine and could talk for hours about the psychosocial impact of living with a hereditary cancer syndrome. If you are new to the LFS world, it can be overwhelming and scary. Despite the hours of research, despite
- [About LFS](https://livinglfs.org/about-lfs/) - About LFS Printable pdf MDANDERSON LFS Printable Genetics Home Reference NIH American Society of Clinical Oncology(ASCO) LFS Printable .
- [Go Grey In May- Choroid Plexus Tumors](https://livinglfs.org/go-grey-in-may-choroid-plexus-tumors/) - May is Brain Tumor Awareness Month. Families with LFS are very aware of how brain tumors can change lives. There are certain brain tumors that are linked to Li Fraumeni Syndrome and one of these is Choroid Plexus Carcinoma. The choroid plexus is within each ventricle in the brain. The plexus is a series of
- [Hypochondria or LFS? Top Symptoms Not to Ignore](https://livinglfs.org/hypochondria-or-lfs-top-symptoms-not-to-ignore/) - There are so many symptoms that could be anything, a bug, a bacteria, allergies, or a brewing cancer. Headaches, a cough, lumps, fatigue could all be a symptom of your body fighting an infection or they could be something more. How do you find balance between worrying about cancer when you have LFS and normal
- [Mike Peterson- Helping Others until the End](https://livinglfs.org/mike-peterson-helping-others-until-the-end/) - Michael Peterson was famous in the LFS support group for saying- "Cancer can kiss my ass."And it can. There is no one way to deal with LFS and Michael Peterson never yielded. He lost his mother to cancer and then both children, he had every right to be angry at the disease that took his
- [Our Urban Development Plan Funding](https://livinglfs.org/standard-post-format/) - Nullam augue cupidatat litora phasellus blandit integer tellus libero facere architecto, egestas? Morbi sem voluptates eu, cursus. Deserunt repellat aliquip, deleniti! Occaecat. Nullam turpis, adipiscing vitae fugit placerat, blandit deleniti, ipsum mauris fusce massa feugiat? Exercitationem? Tenetur hac cupiditate lacus? Ipsam repudiandae fugit pede aliquip curae corporis iste? Eleifend. Doloremque, dolorem porta, sequi blanditiis? Elementum
- [Another Standard Post Format](https://livinglfs.org/another-standard-post-format/) - Illo. Ultricies habitasse, nisl officiis sociosqu, impedit nostrud praesent, pulvinar laudantium aenean! Sollicitudin penatibus suscipit, placerat magna, mattis! Accusamus, dolorem iusto? Eos eget vero vestibulum ullam tenetur, rem consequat maecenas eaque integer pretium, commodo nostrum? Montes lobortis turpis mattis! Assumenda, ante placerat! Quisquam accusamus cillum voluptatum doloribus condimentum eveniet? Per. Montes consequat laborum pharetra interdum
- [Quote Post Format](https://livinglfs.org/quote-post-format/) - "Never be afraid to raise your voice for honesty and truth and compassion against injustice and lying and greed." William Faulkner
- [Chat Post Format](https://livinglfs.org/chat-post-format/) - Q: "Do you know how many records you've sold up to the present time?" RINGO: "Uhh, well... The last count was, umm, six million, I think. JOHN: (jokingly) "That's just Ringo's records." PAUL: (laughs) RINGO: "Well, the others' are on sale."
- [Link Post Format](https://livinglfs.org/link-post-format/) - The Civil Rights Movement.
- [Aside Post Format](https://livinglfs.org/aside-post-format/) - This is an aside post format. I never tried to prove nothing, just wanted to give a good show. My life has always been my music, it's always come first, but the music ain't worth nothing if you can't lay it on the public. The main thing is to live for that audience, 'cause what
- [Lorem Ipsum Solar Sit Emit](https://livinglfs.org/lorem-ipsum-solar-sit-emit/) - Imperdiet et aut, quae ornare per, proident in aut pede tempus, sollicitudin consequuntur sequi? Delectus, optio magna cubilia cillum mollit, habitasse wisi placerat sollicitudin potenti eget aptent occaecat dis dignissimos? Magni doloribus voluptatum? Quas soluta tortor dignissimos? Mollis fusce, arcu, viverra lectus harum inceptos hendrerit, luctus, reprehenderit elit. Animi, explicabo culpa fermentum sociosqu, duis suscipit
- [Standard Post Form Without a Featured Image](https://livinglfs.org/standard-post-form-without-featured-image/) - Quos elementum earum, conubia praesentium quos? Cursus blandit saepe, elit nonummy, volutpat magnam numquam, euismod sagittis qui ea, tempora commodi repellat porttitor? Itaque proident scelerisque tempore sunt, odio lobortis maecenas, dolore mattis! Non velit, occaecati adipisci omnis recusandae dolorum, reiciendis, hendrerit accusamus! Cupiditate diamlorem culpa quae alias magnam ullamco nam, ab porro. Perspiciatis perspiciatis nostrud
- [Finding Your LFS CARE Community](https://livinglfs.org/finding-your-lfs-care-community/) - One of the first questions mutants ask after diagnosis is- where should I go to receive the best care for LFS? Like everything when living LFS- that depends. It depends on where you live. It depends on your insurance and financial resources. It depends on your lifestyle and how you want to approach screening and
- [Mutant Thoughts on Genetic Testing for LFS](https://livinglfs.org/mutant-thoughts-on-genetic-testing-for-lfs/) - Perhaps you had cancer at an early age, or your child had a cancer at an early age and while talking to an oncologist you start going over your family history of cancer. After the oncologist flips over your chart to get more room for your history of cancer- a light clicks on. There's something
- [Tribute to Sarah](https://livinglfs.org/tribute-to-sarah/) - Tribute to Sarah by Jen Kaufman My cousin Sarah died on the first day of 2014. She fought breast cancer with Li Fraumeni Syndrome genes and lost. I want to share my thoughts to help others heal. That is what she would have wanted. She just got me slippers for Christmas and a beautiful
- [Metformin Clinical Trial for LFS](https://livinglfs.org/metformin-clinical-trial-for-lfs/) - The NIH recently released information regarding a new Clinical Trial for people with LFS. The Trial(#NCT01981525) uses Metformin, a drug traditionally used to treat type 2 diabetes. Information on the trial can be found here. In this Metformin Trial, researchers are looking for 36 adults(over the age of 18) who have a documented germ line
- [LFS Positive, When it's OK to be Negative](https://livinglfs.org/lfs-positive-when-its-ok-to-be-negative/) - When you are living with LFS, there are a lot of positives and negatives. Almost everyone is positive that they don't want to be positive- yet somehow it seems wrong to want to be negative?Positively LFS. Being LFS positive means you HAVE a mutation in the p53 tumor suppressor gene. That means all your cells
- [Shannon Writes about Growing Up LFS](https://livinglfs.org/shannon-writes-about-growing-up-lfs/) - When my cousin Jen asked me to write a blog entry about living with Li-Fraumeni Syndrome, I had no idea what I would even write about. “Am I really qualified to write about this? I've never even had cancer.” Not thinking of LFS as much as possible outside of annual check-ups and scans is a
- [Mushrooms: Anti Cancer or just Fun Guys?](https://livinglfs.org/mushrooms-anti-cancer-or-just-fun-guys/) - Mushrooms. The Magical world of Mushrooms. There are many types of mushrooms. Some mushrooms are edible and some are not, some cause disease and others cure it. Ancient Egyptian Pharoahs declared mushrooms only fit for royal consumption. Many varieties of mushrooms are used in Chinese medicine and have been for thousands of years. Mycology, the
- [Jessica Wallace Sergeant- Running with Angels](https://livinglfs.org/jessica-wallace-sergeant-running-with-angels/) - Jessica Wallace Sergeant is an inspiration to the LFS community and anyone who knew her. Although LFS took this beautiful woman at the age of 32, the 32 years she had meant the world to those who love her and in Jess's own words, were "totally worth it". On September 12, 1981, Jessica Jane Wallace
- [The Anti-Tumor-ific Properties of Turmeric](https://livinglfs.org/the-anti-tumor-ific-properties-of-turmeric/) - Turmeric is a spice from a root related to ginger that's been used in Asian and Indian cooking for thousands of years. Turmeric is regularly used in Ancient Indian medicine called Ayurveda. Turmeric was the original dye used to make the robes of Buddhist monks the traditional yellow- orange color, symbolic of the sun. It
- [2013 LFS Conference- Boston](https://livinglfs.org/2013-lfs-conference-boston/) - On the evening of October 25th, over 100 family members who live with LFS met to share stories and relate to this tough journey over dinner at the Inn at Longwood Medical. Dinner was graciously hosted by the Li Fraumeni Syndrome Association and sponsored by Myriad Genetics Labratories . Families and friends gathered around round
- [Breast Cancer and LFS](https://livinglfs.org/breast-cancer-and-lfs/) - A woman with LFS has a much greater risk of developing Breast Cancer in her lifetime. Not all cancers are equal, knowing LFS status can affect screening and treatment.
- [Linda Zercoe is  A Kick-Ass Fairy](https://livinglfs.org/linda-zercoe-is-a-kick-ass-fairy/) - In the first memoir that even mentions Li Fraumeni Syndrome, author, blogger and LFSer Linda Zercoe takes us through a journey most LFSers can identify with. Her trials and tribulations with family, cancer and all the curveballs thrown at her are handled with strength, courage and a kick-ass sense of humor.The book description at Amazon
- [Nutrition and LFS: IP-6 and Inositol](https://livinglfs.org/nutrition-and-lfs-ip-6-and-inositol/) - Ever since we were kids, we are told to eat a healthy diet. When we were young- cereals and other grains made up the foundation of the food pyramid. Since then, the food pyramid changed and the recommendations on portions has also changed. One thing is constant- eating a variety of fruits and vegetables is
- [Scanxiety](https://livinglfs.org/scanxiety/) - Scanxiety is a very real emotion for many people with cancer and is especially prevalent in LFS. Anxiety causes shortness of breath- or is it a lung tumor? Stress headaches accompany scanxiety, could it be a brain tumor? With LFS there are no shortage of scans- it feels like a perpetual loop of scanning and
- [Pediatric Cancer: LFS style](https://livinglfs.org/pediatric-cancer-lfs-style/) - It is difficult for most people to imagine what it is like when your child has cancer. I have tried to explain what my son Brent’s journey was like on our caringbridge site, because I know that my friends could not understand nor relate to how brutal the chemotherapy beat down was for him, nor
- [Pediatric Adrenocortical Carcinoma in LFS](https://livinglfs.org/pediatric-adrenocortical-carcinoma-in-lfs/) - There is no official awareness ribbon color for adrenocortical carcinoma(ACC), definitely not one that would be recognizable since it is such a rare cancer. This is not a cancer that is seen very often in the general population, but it is one of the core LFS tumors. Adrenal tumors linked to LFS usually happen in
- [An LFS Standard of Care](https://livinglfs.org/an-lfs-standard-of-care/) - There are really tough decisions when you find out you have cancer. There are a lot of really tough decisions to make when you have LFS. There are a lot of really tough decisions to make when you are caring for someone with LFS. There is no standard of care for LFS. As far as
- [The LFS Family](https://livinglfs.org/the-lfs-family/) - Living with LFS can present challenges to the healthiest of family relationships. Many families with LFS have to find a way to adjust to their ever changing health but to their relationships as well. Cancer changes people's priorities, their outlook on living and surviving and often times it leaves permanent physical scars. The emotional scars
- [The Ride by Linda Zercoe](https://livinglfs.org/the-ride-by-linda-zercoe/) - The Ride By Linda Zercoe July 5, 2013 I live in beautiful California about 35 miles east of the great city of San Francisco. About two and one-half hours from my home is the famous coastal community of Santa Cruz. It is here where people go to the beach from my town and many
- [Spotlight on Sarcoma](https://livinglfs.org/spotlight-on-sarcoma/) - July is Sarcoma Awareness Month and there is a LONG way to go on the road to awareness. Mere weeks after having a Fibrohistiocytic Tumor removed from my arm- I was registering at a major cancer center and the lady behind the desk gasped and asked What happened? I told her it was a sarcoma
- [The George Pantziarka TP53 Trust](https://livinglfs.org/the-george-pantziarka-tp53-trust/) - George Pantziarka George Pantziarka was only 2 years old when he was diagnosed with his first cancer. George was diagnosed again with cancer at the age of 15, then only months later with an osteosarcoma. After this third diagnosis, George was tested and diagnosed with Li Fraumeni Syndrome, possibly inherited from his mother who died
- [To Mammogram or Not to Mammogram?](https://livinglfs.org/to-mammogram-or-not-to-mammogram/) - That is a question that many women ask, yet for Li Fraumeni Syndrome ladies, there are even more questions. According to the American Cancer Society 1 out of every 8 women will develop breast cancer in her lifetime. The risk is significantly higher for women with LFS. It is estimated that 50% of women with
- [Gray Matter- Brain Tumors in LFS](https://livinglfs.org/gray-matter-brain-tumors-in-lfs/) - In 1969, Dr. Frederick Li was having a casual conversation with a couple of colleagues at the National Cancer Institute. He became intrigued by hearing of a family who had 3 young patients with rare soft tissue sarcomas. This cancer was so rare- it was estimated at the time only 1 person per 100,000 would
- [Roberta's Story](https://livinglfs.org/robertas-story/) - A few days ago my daughter texted a request to me. She set up a blog as a compendium for the Facebook LFS Support Group and she wants to feature stories of people's journeys with LFS. She wanted to know if I would write the first one. I was caught off guard. I texted
- [Living with Li Fraumeni Syndrome](https://livinglfs.org/living-with-li-fraumeni-syndrome/) - I don't think anyone can ever be prepared to hear they have cancer. The last thing a person wants to think about when dealing with cancer is the possibility that they might have a family cancer syndrome. We can't change our genetics. We cannot change the fact that we may have inherited a dysfunctional copy

## Pages

- [Home](https://livinglfs.org/) - At Living LFS, we encourage, empower, and educate those living with Li-Fraumeni Syndrome by connecting them with care, resources, and others who are Living LFS.
- [LFS Hardship Grants](https://livinglfs.org/our-work/lfs-hardship-grants/) - Living with Li-Fraumeni syndrome (LFS) can be financially devastating to a family. Read about our impact, and help us help more LFS families in need.
- [Li-Fraumeni Syndrome Awareness Day and Month](https://livinglfs.org/lfs-awareness/) - March 20th is Li-Fraumeni Syndrome Awareness Day March is Li-Fraumeni Syndrome Awareness Month Donate to LFS Hardship Grants! May 3rd (5/3) is International LFS Awareness Day What is Li-Fraumeni Syndrome? Li-Fraumeni syndrome (LFS) is one of 7,000 rare diseases that affect 25-30 million Americans. It is estimated that over 500 families in the U.S. and over
- [Jennifer Mallory Family Camp](https://livinglfs.org/our-work/jennifer-mallory-family-camp/) - Family camp provides the Li-Fraumeni syndrome community with the tools to manage the challenges associated with having a predisposition to developing cancer.
- [Donate](https://livinglfs.org/donate/) - Do Good. Feel Good. Donate Today. Li-Fraumeni syndrome (LFS) is both devastating in its impact and isolating in its rarity. Living LFS is a 501(c)(3) non-profit with the mission to encourage, empower, and educate those living with LFS. Your donations allow us to connect LFS patients to care, resources, and each other, making LFS hardship
- [One-On-One Support](https://livinglfs.org/support/one-on-one-support/) - One-on-One Support Having Li-Fraumeni syndrome (LFS) and/or cancer often means dealing with heavy emotions and life-changing decisions regarding genetic testing, treatment, and preventative measures.If you live the LFS life, you know that sometimes the best therapy for cancer is just talking to someone who’s been there. Living LFS and Imerman Angels share the belief that
- [Board of Directors](https://livinglfs.org/our-work/board-of-directors/) - The current Board of Directors, past board members, contributors, volunteers, and founding members who make Living LFS what it is today are all featured here.
- [Resources](https://livinglfs.org/resources/) - Resources SCREENING While there is still a psychological cost to learning that you carry a p53 mutation, many find benefit, both physically and psychologically, to screening. Screening allows for cancer to be found earlier in more treatable stages, which is empowering. There is also the psychological reassurance that come when nothing remarkable is found.Consider taking
- [Contact Us](https://livinglfs.org/contact/) - Contact Us Need to ask us anything? Would you like to share your story? Recommend a hospital, oncologist, or genetic counselor in your area? Feel free to email, call, or send us mail! Email our general inbox at hello@livingLFS.org or feel free to contact a Living LFS Board Member personally and someone should get back
- [Memorials](https://livinglfs.org/support/memorials/) - Honoring, remembering and celebrating those in the Li-Fraumeni syndrome community who have passed on.
- [History of Living LFS](https://livinglfs.org/our-work/history-of-living-lfs/) - History of Living LFS 2022 The 2022 Living LFS Jennifer Mallory Family Camp brings over 100 members of the LFS community together at Rocky Mountain Village Easterseals Camp in Empire, Colorado for psychosocial support and education from clinicians, while meeting, sharing experiences, and participating in fun activities with other LFS families. Members with LFS also
- [Support](https://livinglfs.org/support/) - Support ONLINE SUPPORT: The Short Version Living LFS is active and public on Facebook, Instagram, Twitter and LinkedIn. We welcome you to become a part of any of our public online communities.Li-Fraumeni Syndrome Support Group: private Facebook group specifically for those living with LFS, their caregivers, and parents of minors with LFS.Li-Fraumeni Support Group –
- [Opt-out preferences](https://livinglfs.org/opt-out-preferences/)
- [Social Media Coordinator Volunteer](https://livinglfs.org/social-media-coordinator-volunteer/) - We're seeking a volunteer to promote our active campaigns, advocate for those with Li-Fraumeni syndrome, and raise LFS awareness on our social media. Apply now!
- [Podcast](https://livinglfs.org/resources/podcast/) - Living LFS has partnered with Melodic Caring Project to uplift members of the LFS community with music therapy. Levi Ware shares stories of hope in this interview.
- [Mailing List](https://livinglfs.org/mailing-list/) - Stay up to date on the latest Living LFS activities by signing up for our mailing list. On this page you can also catch up on previous newsletters!
- [Our Work](https://livinglfs.org/our-work/) - Our Work Living LFS Mission Statement We encourage, empower, and educate those living with Li-Fraumeni Syndrome by connecting them with care, resources, and others who are Living LFS. Living LFS Vision Statement Our vision is to provide emotional support and resources to make living LFS easier. Meet our Board of Directors and Our Founders. Living
- [Music Therapy](https://livinglfs.org/support/music-therapy/) - Music Therapy Living LFS is proud to partner with Melodic Caring Project (MCP), a 501(c)3 non-profit bringing hope, connection, and the power of music to people battling illness and isolation around the world. Learn more about the benefits of music therapy.Children, adults, and families with Li-Fraumeni syndrome are frequently battling cancer: undergoing chemotherapy, surgery, radiation,
- [Partnerships](https://livinglfs.org/our-work/partnerships/) - Partnerships Living LFS is a member of the Coalition Against Childhood Cancer (CAC2), a collaborative network of organizations and individuals supporting and servicing the childhood cancer community. CAC2 effectively advances a variety of childhood cancer causes by unifying the childhood cancer community through broad-based coordinated action and collaboration that leverages the strengths and expertise of
- [Impressum](https://livinglfs.org/impressum/)
- [Financials](https://livinglfs.org/our-work/financials/) - Financials Living LFS, Inc. has been a 501(c)(3) tax exempt non-profit organization incorporated in the state of Illinois since July 14, 2014.Living LFS Federal Employer Identification Number (EIN): 47-1326501Search the IRS website to view our tax exempt organization status and details, or view our annual reports: 990-N, 2014 through 2020
- [Privacy Statement (AU)](https://livinglfs.org/privacy-statement-au/)
- [Cookie Policy (AU)](https://livinglfs.org/cookie-policy-au/)
- [Disclaimer](https://livinglfs.org/disclaimer/)
- [Cookie policy (EU)](https://livinglfs.org/cookie-policy-eu/)
- [Privacy statement (EU)](https://livinglfs.org/privacy-statement-eu/)
- [Cookie policy (UK)](https://livinglfs.org/cookie-policy-uk/)
- [Privacy statement (UK)](https://livinglfs.org/privacy-statement-uk/)
- [Privacy statement (CA)](https://livinglfs.org/privacy-statement-ca/)
- [Privacy statement (US)](https://livinglfs.org/privacy-statement-us/)
- [Cookie policy (CA)](https://livinglfs.org/cookie-policy-ca/)
- [Terms & conditions](https://livinglfs.org/terms-conditions/)
- [About Li-Fraumeni Syndrome](https://livinglfs.org/about-li-fraumeni-syndrome/) - About Li-Fraumeni Syndrome WHAT IS LI-FRAUMENI SYNDROME? Li-Fraumeni Syndrome (LFS) is one of 7,000 rare diseases that affect 25-30 million Americans. It is estimated that over 500 families in the U.S. and over 1,000 multigenerational families worldwide have Li-Fraumeni Syndrome.Li-Fraumeni Syndrome (LFS) is linked to a mutation in the TP53 tumor suppressor gene. There are
- [Care](https://livinglfs.org/resources/care/) - Care Cancer Centers and Contact Information Our care page is a work in progress. Please check back often as we update this page with the most up to date facilities and resources to help you live with LFS. The centers listed below are familiar with LFS and can help answer questions about Li-Fraumeni Syndrome.Do you
- [LFS Cancers](https://livinglfs.org/lfs-cancers/) - LFS Cancers Common Li-Fraumeni Syndrome Cancers The majority of cancers which affect those with Li-Fraumeni syndrome fall within four main types: adrenocortical carcinomas, breast cancer, central nervous system tumors, and sarcomas. Sarcoma Sarcomas are cancers that begin in the bone or soft tissues in the body, including fat, muscle, cartilage, fibrous tissue, or other connective
- [Events](https://livinglfs.org/events/) - Events Living LFS Jennifer Mallory Family Camp 2026 The 2nd Annual Tre Shelly Memorial Golf Tournament A Benefit for Cancer Genetics Research Living LFS Jennifer Mallory Family Camp 2024 2023 LFS Adults-Only Nashville Getaway Li-Fraumeni Syndrome Awareness 2023 2023 Rare Disease Week on Capitol Hill Living LFS Jennifer Mallory Family Camp 2022 WEBINAR: Talking to
- [Blog](https://livinglfs.org/blog/) - Blog Volunteers Wanted for Living LFS You can help us help the ENTIRE Li-Fraumeni syndrome community! Note, these are not in order of importance – every volunteer, in any capacity, has Read More » June 13, 2025 No Comments March is Li-Fraumeni Syndrome Awareness Month: Families With Devastating Cancer Condition to Receive Financial Relief FOR
- [Thank You](https://livinglfs.org/thank-you/) - Thank You For Your Donation! We appreciate you! Your donations made events such as our 1st Annual Living LFS Family Camp possible and will help us prepare for our 2nd Annual Living LFS Family Camp. Your contributions allow us to connect patients to care, resources and, most importantly, each other. 100% of all funds raised
- [All International Listings](https://livinglfs.org/resources/care/international-listings/) - Care: All International Listings [table id=11 /] Search Facilities Recommended by the Living LFS Community View All United States Listings All International Listings
- [West South Central Region](https://livinglfs.org/resources/care/west-south-central/) - Care: West South Central [table id=4 /] Search Facilities Recommended by the Living LFS Community View All United States Listings All International Listings
- [West North Central Region](https://livinglfs.org/resources/care/west-north-central/) - Care: West North Central Region [table id=3 /] Search Facilities Recommended by the Living LFS Community View All United States Listings All International Listings
- [South Atlantic Region](https://livinglfs.org/resources/care/south-atlantic/) - Care: South Atlantic Region [table id=7 /] Search Facilities Recommended by the Living LFS Community View All United States Listings All International Listings
- [Pacific Region](https://livinglfs.org/resources/care/pacific-region/) - Care: Pacific Region [table id=1 /] Search Facilities Recommended by the Living LFS Community View All United States Listings All International Listings
- [New England Region](https://livinglfs.org/resources/care/new-england/) - Care: New England Region [table id=9 /] Search Facilities Recommended by the Living LFS Community View All United States Listings All International Listings
- [Mountain Region](https://livinglfs.org/resources/care/mountain-region/) - Care: Mountain Region [table id=2 /] Search Facilities Recommended by the Living LFS Community View All United States Listings All International Listings
- [Mid-Atlantic Region](https://livinglfs.org/resources/care/mid-atlantic/) - Care: Mid-Atlantic Region [table id=8 /] Search Facilities Recommended by the Living LFS Community View All United States Listings All International Listings
- [East South Central Region](https://livinglfs.org/resources/care/east-south-central/) - Care: East South Central Region [table id=6 /] Search Facilities Recommended by the Living LFS Community View All United States Listings All International Listings
- [East North Central Region](https://livinglfs.org/resources/care/east-north-central/) - Care: East North Central Region [table id=5 /] Search Facilities Recommended by the Living LFS Community View All United States Listings All International Listings
- [All United States Listings](https://livinglfs.org/resources/care/us-listings/) - Care: All United States Listings [table id=10 /] Search Facilities Recommended by the Living LFS Community View All United States Listings All International Listings

## Team

- [Andi Last](https://livinglfs.org/team/andi-last/) - Living LFS president Andi Last shares her family story of Li-Fraumeni syndrome and how she became involved with patient support and awareness-raising.
- [Linda Humpert](https://livinglfs.org/team/linda-humpert/) - My journey through this started in 1963 when I lost my older brother who was 8 years old to adrenal cortical carcinoma (adrenal cancer). It was determined that I also had it at the same time. After a bilateral adrenalectomy, which I survived, but we lost my older brother. My mother died in 1978 from
- [Trishia Shelly-Stephens](https://livinglfs.org/team/trishia-shelly-stephens/) - Contact Trish: Trish@LivingLFS.org I’m Trishia and I’m so honored to be a part of Living LFS. In 1992 I was diagnosed with breast cancer when I was 21 years old and pregnant. 6 months after giving birth to my son, I was diagnosed with breast cancer in my remaining breast. When my son was 2
- [Jennifer Mills](https://livinglfs.org/team/jennifer-mills/) - Contact Jennifer: Mills@LivingLFS.org Cancer has played a defining role in my life. I lost my father to leukemia, my aunt and grandmother to breast cancer and my brother to adrenal cortical carcinoma all at extremely young ages. I have had six primary cancers as well. Cancer has the innate ability to show up when you
- [RD Mooney](https://livinglfs.org/team/rd-mooney/) - Contact DeAnn: DeAnn@LivingLFS.org Hello, I'm DeAnn. I am a founding member of Living LFS and have been actively Living LFS since my diagnosis in 2002. Jennifer Mallory and Trishia Shelly-Stephens were the first two people I met who were like me. From a group on a website called MD Junction, to a Facebook group, then
- [Greg Harper](https://livinglfs.org/team/greg-harper/) - Contact Greg: Greg@LivingLFS.org My introduction to Li-Fraumeni syndrome occurred when my wife was diagnosed with a p53 mutation while battling HER2 positive breast cancer at the age of 32. There were so many questions and going to Google was not giving us the answers we were looking for. After searching around awhile, I stumbled upon the
- [Carly Grant, MS, LCGC](https://livinglfs.org/team/carly-grant-ms-lcgc/) - Contact Carly: cfgrant@partners.org Ms. Grant is a Senior Genetic Counselor at the Massachusetts General Hospital (MGH) Center for Cancer Risk Assessment (CCRA), which she joined in 2015. She holds a Bachelor’s degree in Molecular Biology from Haverford College (1997) and a Master’s degree in Genetic Counseling from Brandeis University (2005). Prior to joining MGH, Ms.
- [Catherine Wilsnack, MSW, LMSW](https://livinglfs.org/team/catherine-wilsnack/) - Contact Catherine: Catherine@LivingLFS.org Catherine Wilsnack, MSW, LMSW, is a licensed social worker with expertise in counseling individuals and families with serious illness, particularly cancer predisposition syndromes like LFS. She is a doctoral student at the University of Texas at Austin Steve Hicks School of Social Work. Catherine earned her B.S. in Psychology from the University
- [Jaclyn Schienda, ScM, CGC](https://livinglfs.org/team/jaclyn-schienda/) - Contact Jackie: Jackie@LivingLFS.org Jaclyn Schienda is the Lead Genetic Counselor of the Pediatric Cancer Genetic Risk Program and the Bone Marrow Failure/MDS Program at the Dana-Farber Cancer Institute and Boston Children's Hospital. She graduated from the Johns Hopkins University joint genetic counseling training program with the National Human Genome Research Institute at the NIH in
- [Tanya Lamons](https://livinglfs.org/team/tanya-lamons/) - When My mom got cancer, I fought hard for her to live, took on the majority of her care needs, but it wasn't enough. She lost her battle quickly. At the young age of 15, myself and my three siblings started a new path without our Mother. The perspective gained was that every second is
- [Robyn Hamilton](https://livinglfs.org/team/robyn-hamilton/) - Hi my name is Robyn Hamilton. I am an educator, wife and mom of 2 boys. My youngest is LFS positive. In 1997 my dad, who was an only child as was his father, was diagnosed with an aggressive brain tumor. As we had no family history of cancers and he was 48 years old
- [Lisa Wickens](https://livinglfs.org/team/lisa-wickens/) - Hi my name is Lisa! I always felt like I had a pretty normal life. I had an uneventful but happy childhood with my parents and sister in a small town in Canada. I was fortunate enough to enjoy my childhood, graduate from college, work in my profession, settled down to build a life and a family. I
- [D'Ana Reed](https://livinglfs.org/team/dana-reed/) - In Loving Memory of D'Ana Reed, 1974 - 2017 From D'Ana's sister, Courtney: My sister and I have shared a lot of things over the years, but of all the things I could have possibly shared with her, a genetic disorder that makes you prone to multiple cancers certainly was not on the list. I
- [Ami Gignac](https://livinglfs.org/team/ami-gignac/) - As a young girl, I was introduced to LFS in a room full of family, laughs, and love. My uncle proudly strutted through the living room in a pair of jeans with a handmade p53 patch on the back pocket. I didn't understand the acronym or the gravity of his fashion statement, but I did
- [Courtney Ma'at](https://livinglfs.org/team/courtney-maat/) - My name is Courtney Ma'at, MSW, LICSW. I am a Licensed Clinical Social Worker, so non profit work is part of who I am and what I enjoy. I love being a part of this organization and really believe in positive mental health and spiritual wellness. As a young woman I had multiple tumors removed
- [Ann Ramer](https://livinglfs.org/team/ann-ramer/) - Contact Ann: Ann@LivingLFS.org Cancer is tough. LFS is exponentially harder. I have always said "Whatever gets you through." For me, it has been enormously helpful to develop friendships with other mutants who can understand this life in ways that non-mutants can only guess at. My second coping mechanism has been to learn as much as
- [Jen Mallory](https://livinglfs.org/team/jen-mallory/) - March 20, 1976 – October 5, 2020 We are devastated and heartbroken to announce the passing of our founder, Jennifer Mallory, on Monday October 5, 2020. She was 44. View Jennifer Mallory’s online memorial service View the Mallory Family video “Please don’t say that I “lost” my life, battle, journey, whatever to cancer. Period.
- [Tom Connolly](https://livinglfs.org/team/tom-connolly/) - Contact Tom: Tom@LivingLFS.org I first saw LFS mentioned in print on the front page of the WSJ in the summer of 1992. I am sure millions just glanced at the headline or read and forgot it, but in our family, we were painfully aware something was happening and maybe now it had a name. My
- [Inge Vandormael](https://livinglfs.org/team/inge-vandormael/) - Contact Inge: Inge@LivingLFS.org There was a lot of cancer in my family. Growing up in Belgium, I always thought maybe it was because of the Chernobyl nuclear disaster, just 2100 km (1300 miles) away. Fast-forward to April of 2016: now living in New York City, I was diagnosed with breast cancer. While discussing a treatment

## Events

- [Living LFS Jennifer Mallory Family Camp 2026](https://livinglfs.org/events/living-lfs-jennifer-mallory-family-camp-2026/) - August 21-24, 2026 Camp Korey 24880 Brotherhood RoadMount Vernon, WA 98274 campkorey.org Confirmed Speakers Dr. JOSHUA SCHIFFMAN Dr. Schiffman’s virtual talk, Guardian of People and Elephants: p53 in Li-Fraumeni Syndrome, will describe how p53 works in people to protect from cancer and will describe the latest research in the field of Li-Fraumeni Syndrome (LFS). He
- [The 2nd Annual Tre Shelly Memorial Golf Tournament](https://livinglfs.org/events/the-2nd-annual-tre-shelly-memorial-golf-tournament/) - July 18, 2026 @ 9:00 AM Staggered Start Cabinet View Golf Club — 300 Cabinet Heights Rd, Libby, MT 59923 Register Online Join Living LFS founding member Trishia Shelly-Stephens for a super fun golf scramble tournament to honor the ultimate cancer warrior, her son Tre Shelly, who passed away on August 17, 2023 after living
- [A Benefit for Cancer Genetics Research](https://livinglfs.org/events/a-benefit-for-cancer-genetics-research/) - June 17, 2026 @ 6:00PM — 9:00PM Eastern Time (US & Canada) Calissa: 1020 Montauk Hwy Water Mill, NY 11976 Register Online The Power of Knowing: How Our Family History Is Shaping the Future of Cancer Care Join us for an elegant summer evening in the Hamptons as we gather to celebrate the start of the
- [Living LFS Jennifer Mallory Family Camp 2024](https://livinglfs.org/events/living-lfs-jennifer-mallory-family-camp-2024/) - by Trishia Shelly-Stephens, photos by Inge Vandormael & Andi Last — What do you get when you put 44 LFS patients and 44 family members, including a Pulitzer Prize winning author and 10 medical and mental health professionals, together in Ohio? The 2024 Living LFS Jennifer Mallory Family Camp, of course!This year’s camp took place
- [2023 LFS Adults-Only Nashville Getaway](https://livinglfs.org/events/2023-lfs-adults-only-nashville-getaway/) - Thirty adults from the Li-Fraumeni syndrome (LFS) community converged on Nashville, Tennessee for a weekend of bonding and togetherness, November 2-5, 2023. We stayed at the gorgeous Gaylord Opryland Resort & Convention Center. On Friday night, we enjoyed a meal and many laughs at Nashville’s only authentic German beer hall, Bavarian Bierhaus. Saturday night, several
- [Li-Fraumeni Syndrome Awareness 2023](https://livinglfs.org/events/li-fraumeni-syndrome-awareness-2023/) - Living LFS kicked off Li-Fraumeni Syndrome Awareness Month in Washington DC at the EveryLife Foundation’s annual Rare Disease Week on Capitol Hill #RareDC2023 Feb 28 – March 2. Thanks to Living LFS members Lon Humpert (Kansas) and Nicole Scoubes (Utah), as well as Debbie Soprano and Kathleen Higgins from LFSA, for advocating for the entire
- [2023 Rare Disease Week on Capitol Hill](https://livinglfs.org/events/2023-rare-disease-week-on-capitol-hill/) - Living LFS advocated for testing, insurance, and treatments for the Li-Fraumeni syndrome community with Congress members at Rare Disease Week on Capitol Hill.
- [Living LFS Jennifer Mallory Family Camp 2022](https://livinglfs.org/events/family-camp-2022/) - Living LFS is thrilled to announce our next Jennifer Mallory Family Camp: August 11-14, 2022 at Rocky Mountain Village, an Easterseals Camp in Empire, Colorado.
- [WEBINAR: Talking to Kids About LFS](https://livinglfs.org/events/10-28-21-webinar-talking-to-kids-about-lfs/) - Learn tips and tricks for finding the right time, place and strategies for talking to children about Li-Fraumeni syndrome, and share your experiences.
- [2021 Virtual Rare Disease Week on Capitol Hill](https://livinglfs.org/events/2021-virtual-rare-disease-week-on-capitol-hill/) - Big thanks to Registered Nurse, survivor, and patient advocate Treva Vetter for once again representing Living LFS and the entire LFS community once again this year at Rare Disease Week on Capitol Hill. Read about Treva’s experience.
- [Li-Fraumeni Syndrome Awareness 2021](https://livinglfs.org/events/li-fraumeni-syndrome-awareness-2021/) - The inaugural Li-Fraumeni Syndrome Awareness Month in March, 2021 and LFS Awareness Day on March 20, 2021 were a resounding success. View the photos and videos.
- [Mutant Meetups](https://livinglfs.org/events/mutant-meetups/) - Since the beginning, Living LFS has been all about connecting “mutants” – those of us with Li-Fraumeni Syndrome – both in person and online. Enjoy these photos from our many Mutant Meetups over the years.
- [2019 Living LFS Family Camp](https://livinglfs.org/events/2019-living-lfs-family-camp/) - In October 2019, Living LFS presented our first annual Living LFS Family Camp at Camp-Mak-A-Dream in Gold Creek, Montana! It was an unqualified success, and we’re just getting started!!Visit livinglfs.org/donate and help us make the NEXT Living LFS Family Camp a reality!Thank you to all the families, loved ones and caregivers who attended our first family camp and shared
- [2018 LFS REACH 18 International Symposium](https://livinglfs.org/events/2018-lfs-reach-18-international-symposium/) - April 25-29, 2018: Hosted by The Hospital for Sick Children and in partnership with the LiFE Consortium. 2018 LFS Conference Blog Posts
- [2020 Rare Disease Week on Capitol Hill](https://livinglfs.org/events/2020-rare-disease-week-on-capitol-hill/) - (content and photos forthcoming)
- [2017 Rare Disease Week on Capitol Hill](https://livinglfs.org/events/2017-rare-disease-week-on-capitol-hill/) - (content and photos forthcoming)

## Memorials

- [Hanna whyte](https://livinglfs.org/memorial/hanna-whyte/) - Hello my name is Samantha, I want to write this tribute for my big sister Hanna Whyte who passed away on her 19th birthday. She was at home in a hospital bed surrounded by love and family. But everyday is hard without her. Our brother also passed away but before I was born, Hanna knew
- [Kyu Kyu Cheng](https://livinglfs.org/memorial/kyu-kyu-cheng/) - My mother will always be remembered for her sweet loving kindness and tenacity. She had different cancers since 2005 and recently succumbed due to treatment related AML. She will be forever missed.
- [Anna Carolina Macieira Feitosa Mota](https://livinglfs.org/memorial/anna-carolina-macieira-feitosa-mota/) - Anna Carolina was born in Brazil and lived in that country until the day she returned to God. She is my first daughter and she introduced me to a mother's love. When she was only 13 years old, she faced cancer for the first time. She had leukemia and underwent long treatment for 2 years
- [Kiera](https://livinglfs.org/memorial/kiera/) - Kiera was pure light. She loved space and was studying aerospace engineering, hoping to work for NASA. After having cancer at age 19, and then watching so many others in my family pass from cancer, she transferred to Utah State University to study cancer after stating "I'm gonna figure out what's wrong with my family".
- [Charolette Elizabeth Smith](https://livinglfs.org/memorial/charolette-elizabeth-smith/) - This beautiful woman right here is my mama! She suffered from cancer on and off majority of her adult life until god took her away 10 years this year. Herself and her children including her grandchild Elizabeth all live/lived with LFS. & i have had numerous cancers. She never let her loving, wild, courageous spirit
- [Troy Mudgett](https://livinglfs.org/memorial/troy-mudgett/) - My kids and I lost Troy to prostate cancer in September 2023. From his family, to Elvis music, to thunderstorms, to Star Wars, Troy loved deeply and whole heartedly. He was a rock to so many, and will continue to be missed beyond words.
- [Vanessa Leigh Powell](https://livinglfs.org/memorial/vanessa-leigh-powell/) - You came into our family on November 15, 1974, and left us on May 14, 2020. We will love you forever. Until we meet again. Love Mom, Dad & Chris Obituary for Vanessa Leigh Powell age 45 Vanessa Leigh Powell age 45, of Starke passed away Thursday, May 14, 2020 at Haven Hospice E.T. York
- [Gayle Chestnut McElhinney](https://livinglfs.org/memorial/gayle-chestnut-mcelhinney/) - Gayle was such a beautiful soul. Always thinking of others, nothing was ever an issue to her. She lit up every room, always making everyone laugh. I’ll never forget the sound of her laugh! We all miss her so much.
- [Kane McElhinney](https://livinglfs.org/memorial/kane-mcelhinney/) - Kane was the life & soul of every day. He kept everyone around him laughing right til the end. He is the bravest boy we’ve ever known & we miss his light every day.
- [Kim Palmer](https://livinglfs.org/memorial/kim-palmer/) - My sweet mom passed away in 2014 from esophageal and liver cancer. Kim was never diagnosed with Li-Fraumeni syndrome while she was alive. My brother and I were later diagnosed after her passing. My little brother, Davis, has passed on as well. We will see you again. ❤️
- [Alexander Cordero Jr](https://livinglfs.org/memorial/alexander-cordero-jr/) - Alex was the bravest 14 year old I knew. He was a person who cared for everyone. We miss his smile and will always live in our hearts. We miss him so much.
- [Davis Palmer](https://livinglfs.org/memorial/davis-palmer/) - Davis was diagnosed with Li-Fraumeni syndrome at the age of 12 years old after they found an astrocytoma in his brain. He battled for 3 long years before he was taken from us. Dad and I miss you so much buddy. We will see you again. ❤️
- [Jody Knepp](https://livinglfs.org/memorial/jody-knepp/) - Jody we miss you and loved by all. You had a heart of gold, and was more concerned for me in my first diagnosis, while we were doing your own treatment's in D.C. for the 2nd round of cancer.
- [Edward Knepp](https://livinglfs.org/memorial/edward-knepp/) - Dad, I love you, and I'm just you. Dealing with the 3rd cancer at the same age.
- [Ryan Knepp](https://livinglfs.org/memorial/ryan-knepp/) - Ryan, you know, love you brother. I know you mom, dad and Jody are listening to some Oakridge Boys music, like we did on a Sunday afternoon!
- [Ben Halford](https://livinglfs.org/memorial/ben-halford/) - Always happy, smiling, brave. Our little boy taken too soon. Born to be Brave. Miss him everyday
- [Samantha Skye Schwarz](https://livinglfs.org/memorial/samantha-skye-schwarz/) - I wrote this about my daugher on the day she passed, May 18, 2021: My beautiful 18 year old daughter, Samantha, passed away this morning. After fighting cancer for most of her life, her body could not take it anymore. Samantha was the strongest person I know; always fighting and never giving up. She had
- [Gregory Weber Lang](https://livinglfs.org/memorial/gregory-weber-lang/) - My son. Kaitlyn Lang Irish’s brother. Left a huge mark on Naples FL starting a Foundation for HS Seniors so they could be granted college Scholarships. Quoted mantra: “What we do in life echoes in eternity”. A smile that could light up any room!!!
- [Annette Jefferies](https://livinglfs.org/memorial/annette-jefferies/) - You're gone but never forgotten mama💖💖I love you and miss you so much!!!
- [Brandon Hamm](https://livinglfs.org/memorial/brandon-hamm/) - Our dear sweet Brandon. You went through so much bullshit since the age of 3. But you kept fighting no matter how much it hurt or scared you were. You never complained once about what you were going through and you always were so strong. Always smiling no matter what. The words you should have
- [Ainsley Rose](https://livinglfs.org/memorial/ainsley-rose/) - My Ainsley… loved family, friends, hockey, dance, flowers and did everything for others 💜
- [Camala Million](https://livinglfs.org/memorial/camala-million/) - I lost my youngest daughter after my middle daughter. Cami fought 2 brain cancers at the same time, breast cancer, ovarian cancer then her 3rd battle of brain cancer is what finally took her from me. Cami was a determined cancer survivor, but it finally took all her right away.
- [Chelsey Million](https://livinglfs.org/memorial/chelsey-million/) - Lost my middle daughter first, in 2018. Before her passing, she fought brain cancer and breast cancer. She passed from Mets that was not caught from the breast cancer. It spread to her lungs, adrenal glands and bladder. She was a fierce fighter & left on her own terms.
- [Jeremy press](https://livinglfs.org/memorial/jeremy-press/) - My uncle Jeremy- you battled throat cancer for a short few weeks and later they found out it spread to the liver and that you must of had for ages but didn’t know you had it!! you were going through so much pain and not once complained- you were gone so quickly and I miss
- [Rosie pyatt](https://livinglfs.org/memorial/rosie-pyatt/) - Rosie my sweet little sister- you were so brave at 18 months old you battled with adrenal corticol carcinoma and lived well until you were 6 or 7 you fought so hard with leukaemia and sadly passed away shortly after your 8th birthday x your niece maddie is your double! When I see you in
- [Myah Jimenez](https://livinglfs.org/memorial/myah-jimenez/) - My #mightymyah💜💙now walks in paradise with her daddy in heaven. Both had LFS which led to cancer. They both fought a courageous battle for approximately 2 years. My husband in 2013 and recently my sweet girl. I'll miss them both for the rest of my life but hold on to the eternal hope Jesus gives
- [Abbey Fenton](https://livinglfs.org/memorial/abbey-fenton/) - Taken to soon Brain cancer aged 3yrs Mummy and Taya Love you big much baby girl xx Miss you so much xxx
- [Kerry pyatt](https://livinglfs.org/memorial/kerry-pyatt/) - Mum - you were truly an amazing strong woman and I hope your looking over us - i miss you like mad and your grandchildren talk about you often - miss you x see you soon my angel 👼
- [Maira Karišik](https://livinglfs.org/memorial/maira-karisik/) - My daughter Maira had Neuroblastoma and at age of 12 after 3 years of fight gained her Angel wings 💔
- [Zoe HoyPoy](https://livinglfs.org/memorial/zoe-hoypoy/) - Zoe was a true fighter! After her diagnosis she made sure she made the most of every day by making memories with family and friends and living out her dream to go to University. She finished high school with honours despite having chemo throughout her exams. We are so proud of her and all she
- [Addie Brady](https://livinglfs.org/memorial/addie-brady/) - Fours years ago we lost our brave, beautiful Addie.. our hearts are broken and full of sadness as we remember her pain and the brutality of her cancer. We continue to smile because of how she lived her short life, how much she loved and was loved. We love and miss you Addie… love Mummy,
- [Edward P Mills](https://livinglfs.org/memorial/edward-p-mills/) - Eddie Mills- was here for a good time, just not a long time...missed every day.
- [Amaya Elise Robinson](https://livinglfs.org/memorial/amaya-elise-robinson/) - Amaya dealt with a lot in her life. She was born with spina bifida and tetraploidy. Still she was happy loved to read and watch videos- her favorites were Daniel Tiger, Peppa pig and Donald Duck. Rhabdomyosarcoma hit her at age 2 1/2- and although she fought hard, she lost the battle. We will always
- [Barbara Bates](https://livinglfs.org/memorial/barbara-bates/) - Barbie Bates was the most compassionate person. She loved her three children and fought hard to be here for them. Her legacy of love and nurture lives on in her children and family.
- [Cevanah "Savi" Williams](https://livinglfs.org/memorial/cevanah-savi-williams/) - Our sweet girl! Diagnosed with Mosiac LFS just eight short months ago. She fought hard against three brain tumors, the last being a Glioblastoma that metastasized to her spine. The sunshine in our lives - gone forever....We love you! Cody, Cierra, Mommy & Daddy
- [Stacia Danford](https://livinglfs.org/memorial/stacia-danford/) - We lost my daughter Stacia Danford 2 weeks ago. She was told she had LFS after her 1st bout of breast cancer in 2013 when she was 28. Two years later she had a reoccurrence of breast cancer and was fighting it up until she passed... Six weeks ago she was diagnosed with leukemia and
- [Nikkolas Libbey](https://livinglfs.org/memorial/nikkolas-libbey/) - To my beautiful son who loved life to the fullest. His sense of humor and laughter will live on in our hearts forever. He was kind, thoughtful, and strong beyond measure. We miss you so very much.❤️
- [J. Warren Reid](https://livinglfs.org/memorial/j-warren-reid/) - In loving memory of one of the kindest, strongest men I have ever known. As your best friend Dave said after you passed “I know you only had your Dad for 21 years.. but you had more love in those 21 years than most kids get in a life time!” Love you always and forever!
- [Sharon Vetter](https://livinglfs.org/memorial/sharon-vetter/) - You are always within me and we are in this together. Love ya Mom!
- [Nora](https://livinglfs.org/memorial/nora/) - Our darling girl Nora, glitter girl. Who taught us so much about resilience, love and enjoying life no matter what. Missed and loved beyond measure
- [Brittany villeneuve](https://livinglfs.org/memorial/brittany-villeneuve/) - Brittany is our beautiful angel. She was diagnosed with adrenal carcinoma when she was 22 years young. Sadly from the day she was diagnosed to the day of her passing was a short 9 months. Our family is affected by LFS everyday, we send our loving vibes to all the LFS families out there! Xoxo
- [Selena Rose Chun](https://livinglfs.org/memorial/selena-rose-chun/) - We love you and miss you mommy. You are the best mommy in the world.
- [Jaiden Cabrera Merino](https://livinglfs.org/memorial/jaiden-cabrera-merino/) - Gone to soon my beautiful baby boy. You are in a better place where there is no pain and no suffering.
- [Ainsley](https://livinglfs.org/memorial/ainsley/) - Ainsley you have ALWAYS been my strength 💜 You spent 8 years being the best human possible ... always a smile on your face and always a friend to all 💜 I love you and miss you so much 💜
- [Maggie Miller](https://livinglfs.org/memorial/maggie-miller/) - Maggie was an amazing mother, fiancee, daughter, granddaughter, neice, and friend and is missed dearly every day that passes she is in all of our thoughts and memories and will never ever be forgotten she fought a long hard battle and never once complained she was in pain or that she wanted to give up
- [John Berkeley](https://livinglfs.org/memorial/john-berkeley/) - John was an LFS patient, and he was passionate about LFS awareness. John established the first ever online Li-Fraumeni syndrome patient support group, at a website called MD Junction, and was the first president of the LFS Association. In 2016, Jen Mallory said about John, “he has been an integral behind the scenes force and
- [Cathy E. Martin](https://livinglfs.org/memorial/cathy-e-martin/) - Mom, you went through so much at such a young age. Looking back now, as someone who is officially older than her Mom was. I can only imagine how scary it was for a young Mother of 4 to know that this moment is completely out of your control. As a child, I didn’t get
- [Jennifer Mallory](https://livinglfs.org/memorial/jennifer-mallory/) - Jennifer Mallory was an LFS patient, and a fierce advocate for providing emotional and psychosocial support for those living with Li-Fraumeni syndrome. Jen founded Living LFS, a fully volunteer-led 501(c)(3) non-profit patient support organization with the mission to encourage, empower, and educate those living with Li-Fraumeni syndrome by connecting them with care, resources, and others

## Categories

- [Uncategorized](https://livinglfs.org/category/uncategorized/)
- [Personal](https://livinglfs.org/category/personal/)
- [Genetic Testing](https://livinglfs.org/category/genetic-test/)
- [About LFS](https://livinglfs.org/category/about-lfs/)
- [Emotional Support](https://livinglfs.org/category/emotional-support/)
- [Personal Stories](https://livinglfs.org/category/stories/)
- [Breast Cancer](https://livinglfs.org/category/breast-cancer/)
- [Cancer Genetics & Prevention](https://livinglfs.org/category/cancer-genetics-and-prevention/)
- [Care](https://livinglfs.org/category/care/)
- [Support](https://livinglfs.org/category/support/)
- [Screening](https://livinglfs.org/category/screening/)
- [Supplements](https://livinglfs.org/category/supplements/)
- [MSKCC](https://livinglfs.org/category/mskcc/)
- [Pediatric](https://livinglfs.org/category/pediatric/)
- [Adrenal Cancer](https://livinglfs.org/category/adrenal-cancer/)
- [Cancer Risk Program](https://livinglfs.org/category/cancer-risk-program/)
- [Clinical Trials](https://livinglfs.org/category/clinical-trials/)
- [Sarcoma / Osteosarcoma](https://livinglfs.org/category/sarcoma/)
- [Brain Cancer](https://livinglfs.org/category/brain-cancer/)
- [Dana Farber](https://livinglfs.org/category/dana-farber/)
- [Huntsman Clinic](https://livinglfs.org/category/huntsman-clinic/)
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- [NIH](https://livinglfs.org/category/nih/)
- [Memorials](https://livinglfs.org/category/memorials/)
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- [Humor](https://livinglfs.org/category/humor/)
- [Financial Support](https://livinglfs.org/category/financial-support/)
- [2018 LFS Conference](https://livinglfs.org/category/2018-lfs-conference/)
- [2019 Living LFS Family Camp](https://livinglfs.org/category/2019-living-lfs-family-camp/)
- [Press Releases](https://livinglfs.org/category/press-releases/)
- [LFS Awareness](https://livinglfs.org/category/lfs-awareness/)
- [Advocacy](https://livinglfs.org/category/advocacy/)
- [Rare Disease Week on Capitol Hill](https://livinglfs.org/category/rare-disease-week-on-capitol-hill/)
- [Giving](https://livinglfs.org/category/giving/)
- [resources](https://livinglfs.org/category/resources/)
- [Chemotherapy](https://livinglfs.org/category/chemotherapy/)

## Tags

- [experience](https://livinglfs.org/tag/experience/)
- [Living](https://livinglfs.org/tag/living/)
- [p53](https://livinglfs.org/tag/p53/)
- [share stories](https://livinglfs.org/tag/share-stories/)
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- [TP53 gene](https://livinglfs.org/tag/tp53-gene/)
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- [LFSA](https://livinglfs.org/tag/lfsa/)
- [Li-Fraumeni Syndrome](https://livinglfs.org/tag/li-fraumeni-syndrome/)
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- [Dr. Li](https://livinglfs.org/tag/dr-li/)
- [brain tumor](https://livinglfs.org/tag/brain-tumor/)
- [Dana Farber](https://livinglfs.org/tag/dana-farber/)
- [Dr. Garber](https://livinglfs.org/tag/dr-garber/)
- [kids](https://livinglfs.org/tag/kids/)
- [memories](https://livinglfs.org/tag/memories/)
- [mom](https://livinglfs.org/tag/mom/)
- [Josh and Schuyler Cancer Foundation](https://livinglfs.org/tag/josh-and-schuyler-cancer-foundation/)
- [Michael Peterson](https://livinglfs.org/tag/michael-peterson/)
- [Mike Peterson](https://livinglfs.org/tag/mike-peterson/)
- [Grey's Anatomy](https://livinglfs.org/tag/greys-anatomy/)
- [care](https://livinglfs.org/tag/care/)
- [Joshua Schiffman](https://livinglfs.org/tag/joshua-schiffman/)
- [providers](https://livinglfs.org/tag/providers/)
- [angels](https://livinglfs.org/tag/angels/)
- [chemoprevention](https://livinglfs.org/tag/chemoprevention/)
- [Farzana Wolcott](https://livinglfs.org/tag/farzana-wolcott/)
- [metformin](https://livinglfs.org/tag/metformin/)
- [mushrooms](https://livinglfs.org/tag/mushrooms/)
- [elephant](https://livinglfs.org/tag/elephant/)
- [Jessica Wallace Sergeant](https://livinglfs.org/tag/jessica-wallace-sergeant/)
- [colonoscopy](https://livinglfs.org/tag/colonoscopy/)
- [LEAD](https://livinglfs.org/tag/lead/)
- [Louise Strong](https://livinglfs.org/tag/louise-strong/)
- [holidays](https://livinglfs.org/tag/holidays/)
- [mutant hugs](https://livinglfs.org/tag/mutant-hugs/)
- [mutant mixer](https://livinglfs.org/tag/mutant-mixer/)
- [portland](https://livinglfs.org/tag/portland/)
- [ACT](https://livinglfs.org/tag/act/)
- [Dr. Raul Riberio](https://livinglfs.org/tag/dr-raul-riberio/)
- [IGF-2](https://livinglfs.org/tag/igf-2/)
- [St. Jude](https://livinglfs.org/tag/st-jude/)
- [fundraiser](https://livinglfs.org/tag/fundraiser/)
- [hug](https://livinglfs.org/tag/hug/)
- [humor](https://livinglfs.org/tag/humor/)
- [naturopathy](https://livinglfs.org/tag/naturopathy/)
- [ISKS](https://livinglfs.org/tag/isks/)
- [Liddy Shriver Sarcoma Initiative](https://livinglfs.org/tag/liddy-shriver-sarcoma-initiative/)
- [community](https://livinglfs.org/tag/community/)
- [UCSF](https://livinglfs.org/tag/ucsf/)
- [MDJunction](https://livinglfs.org/tag/mdjunction/)
- [choroid plexus](https://livinglfs.org/tag/choroid-plexus/)
- [choroid plexus carcinoma](https://livinglfs.org/tag/choroid-plexus-carcinoma/)
- [Dr. Robson](https://livinglfs.org/tag/dr-robson/)
- [MSKCC](https://livinglfs.org/tag/mskcc/)
- [PROMPT](https://livinglfs.org/tag/prompt/)
- [UPENN](https://livinglfs.org/tag/upenn/)
- [VUS](https://livinglfs.org/tag/vus/)
- [hope](https://livinglfs.org/tag/hope/)
- [Sick Kids](https://livinglfs.org/tag/sick-kids/)
- [Gadolinium](https://livinglfs.org/tag/gadolinium/)
- [multiplex testing](https://livinglfs.org/tag/multiplex-testing/)
- [eCancer](https://livinglfs.org/tag/ecancer/)
- [precancerous niche](https://livinglfs.org/tag/precancerous-niche/)
- [Amazon Smile](https://livinglfs.org/tag/amazon-smile/)
- [donate](https://livinglfs.org/tag/donate/)
- [AML](https://livinglfs.org/tag/aml/)
- [Dr. Andrea Patenaude](https://livinglfs.org/tag/dr-andrea-patenaude/)
- [immunotherapy](https://livinglfs.org/tag/immunotherapy/)
- [liquid biopsy](https://livinglfs.org/tag/liquid-biopsy/)
- [Nationwide Children's Hospital](https://livinglfs.org/tag/nationwide-childrens-hospital/)
- [CT](https://livinglfs.org/tag/ct/)
- [PET](https://livinglfs.org/tag/pet/)
- [tumors](https://livinglfs.org/tag/tumors/)
- [sharks](https://livinglfs.org/tag/sharks/)
- [chemotherapy](https://livinglfs.org/tag/chemotherapy/)
- [colorectal cancer](https://livinglfs.org/tag/colorectal-cancer/)
- [metastasis](https://livinglfs.org/tag/metastasis/)
- [UK](https://livinglfs.org/tag/uk/)
- [chrorid plexus carcinoma](https://livinglfs.org/tag/chrorid-plexus-carcinoma/)
- [Dr. Franza Walcott](https://livinglfs.org/tag/dr-franza-walcott/)
- [Cancer Risk Program](https://livinglfs.org/tag/cancer-risk-program/)
- [Rare Diseases Day](https://livinglfs.org/tag/rare-diseases-day/)
- [Treatment](https://livinglfs.org/tag/treatment/)
- [de novo](https://livinglfs.org/tag/de-novo/)
- [germline mutation](https://livinglfs.org/tag/germline-mutation/)
- [mosaicism](https://livinglfs.org/tag/mosaicism/)
- [mutations](https://livinglfs.org/tag/mutations/)
- [somatic mutation](https://livinglfs.org/tag/somatic-mutation/)
- [tumor suppressor](https://livinglfs.org/tag/tumor-suppressor/)
- [video](https://livinglfs.org/tag/video/)
- [I am Living LFS](https://livinglfs.org/tag/i-am-living-lfs/)
- [I Love Someone Living LFS](https://livinglfs.org/tag/i-love-someone-living-lfs/)
- [T-shirts](https://livinglfs.org/tag/t-shirts/)
- [Coursera](https://livinglfs.org/tag/coursera/)
- [Ohio State University](https://livinglfs.org/tag/ohio-state-university/)
- [Online course](https://livinglfs.org/tag/online-course/)
- [Emilia Modolo Pinto](https://livinglfs.org/tag/emilia-modolo-pinto/)
- [worry](https://livinglfs.org/tag/worry/)
- [COQ10](https://livinglfs.org/tag/coq10/)
- [elephants](https://livinglfs.org/tag/elephants/)
- [LFS in the NEWS](https://livinglfs.org/tag/lfs-in-the-news/)
- [PBS](https://livinglfs.org/tag/pbs/)
- [Lainie Jones](https://livinglfs.org/tag/lainie-jones/)
- [Ambry Genetics](https://livinglfs.org/tag/ambry-genetics/)
- [Discrimination](https://livinglfs.org/tag/discrimination/)
- [GINA](https://livinglfs.org/tag/gina/)
- [Health Insurance](https://livinglfs.org/tag/health-insurance/)
- [hereditary cancer](https://livinglfs.org/tag/hereditary-cancer/)
- [Achatz](https://livinglfs.org/tag/achatz/)
- [Brazil](https://livinglfs.org/tag/brazil/)
- [Conference](https://livinglfs.org/tag/conference/)
- [GBM](https://livinglfs.org/tag/gbm/)
- [andrea kenney](https://livinglfs.org/tag/andrea-kenney/)
- [leukemia](https://livinglfs.org/tag/leukemia/)
- [memorial](https://livinglfs.org/tag/memorial/)
- [pink lemonade cupcakes](https://livinglfs.org/tag/pink-lemonade-cupcakes/)
- [apps](https://livinglfs.org/tag/apps/)
- [children](https://livinglfs.org/tag/children/)
- [Columbus](https://livinglfs.org/tag/columbus/)
- [REACH 16](https://livinglfs.org/tag/reach-16/)
- [Soccer for Hope](https://livinglfs.org/tag/soccer-for-hope/)
- [The Ohio State University](https://livinglfs.org/tag/the-ohio-state-university/)
- [cancer](https://livinglfs.org/tag/cancer/)
- [inherited cancer](https://livinglfs.org/tag/inherited-cancer/)
- [Peytavin](https://livinglfs.org/tag/peytavin/)
- [seven years](https://livinglfs.org/tag/seven-years/)
- [COTI-2](https://livinglfs.org/tag/coti-2/)
- [Critical Outcomes Technologies INC](https://livinglfs.org/tag/critical-outcomes-technologies-inc/)
- [Dr. Wayne Danter](https://livinglfs.org/tag/dr-wayne-danter/)
- [REACH 16 International LFS Conference](https://livinglfs.org/tag/reach-16-international-lfs-conference/)
- [decisions](https://livinglfs.org/tag/decisions/)
- [psychosocial](https://livinglfs.org/tag/psychosocial/)
- [James Higgins](https://livinglfs.org/tag/james-higgins/)
- [Mo Songs For Kerry](https://livinglfs.org/tag/mo-songs-for-kerry/)
- [Dr. Malkin](https://livinglfs.org/tag/dr-malkin/)
- [Founder Gene](https://livinglfs.org/tag/founder-gene/)
- [Maria Isabel Achatz](https://livinglfs.org/tag/maria-isabel-achatz/)
- [Andi Last](https://livinglfs.org/tag/andi-last/)
- [Last Productions](https://livinglfs.org/tag/last-productions/)
- [Mutant vs. Monster](https://livinglfs.org/tag/mutant-vs-monster/)
- [GC](https://livinglfs.org/tag/gc/)
- [Genetic counselors](https://livinglfs.org/tag/genetic-counselors/)
- [National Society of Genetic Counselors](https://livinglfs.org/tag/national-society-of-genetic-counselors/)
- [NSGC](https://livinglfs.org/tag/nsgc/)
- [doctors gave me a death sentence](https://livinglfs.org/tag/doctors-gave-me-a-death-sentence/)
- [false positive](https://livinglfs.org/tag/false-positive/)
- [new york post](https://livinglfs.org/tag/new-york-post/)
- [childhood cancer](https://livinglfs.org/tag/childhood-cancer/)
- [Roberts family](https://livinglfs.org/tag/roberts-family/)
- [sarcoma](https://livinglfs.org/tag/sarcoma/)
- [BRCA](https://livinglfs.org/tag/brca/)
- [Breast Cancer awareness](https://livinglfs.org/tag/breast-cancer-awareness/)
- [Breast Cancer research](https://livinglfs.org/tag/breast-cancer-research/)
- [Facing Our Risk Empowered](https://livinglfs.org/tag/facing-our-risk-empowered/)
- [FORCE](https://livinglfs.org/tag/force/)
- [Hereditary breast cancer](https://livinglfs.org/tag/hereditary-breast-cancer/)
- [PALB](https://livinglfs.org/tag/palb/)
- [Pinktober](https://livinglfs.org/tag/pinktober/)
- [kathy higgins](https://livinglfs.org/tag/kathy-higgins/)
- [advocating](https://livinglfs.org/tag/advocating/)
- [awareness](https://livinglfs.org/tag/awareness/)
- [Fannie](https://livinglfs.org/tag/fannie/)
- [D'Ana Reed](https://livinglfs.org/tag/dana-reed/)
- [Gabby](https://livinglfs.org/tag/gabby/)
- [have you hugged a mutant today?](https://livinglfs.org/tag/have-you-hugged-a-mutant-today/)
- [University of Utah Huntsman Cancer Center](https://livinglfs.org/tag/university-of-utah-huntsman-cancer-center/)
- [wendy kohlmann](https://livinglfs.org/tag/wendy-kohlmann/)
- [hannity](https://livinglfs.org/tag/hannity/)
- [Let there be Light](https://livinglfs.org/tag/let-there-be-light/)
- [media](https://livinglfs.org/tag/media/)
- [movies](https://livinglfs.org/tag/movies/)
- [sorbo](https://livinglfs.org/tag/sorbo/)
- [variants](https://livinglfs.org/tag/variants/)
- [Variants of Uncertain significance](https://livinglfs.org/tag/variants-of-uncertain-significance/)
- [Variants of unknown significance](https://livinglfs.org/tag/variants-of-unknown-significance/)
- [Angel](https://livinglfs.org/tag/angel/)
- [angel tree](https://livinglfs.org/tag/angel-tree/)
- [glioblastoma](https://livinglfs.org/tag/glioblastoma/)
- [josh quist](https://livinglfs.org/tag/josh-quist/)
- [crowdfunding](https://livinglfs.org/tag/crowdfunding/)
- [fundraising](https://livinglfs.org/tag/fundraising/)
- [symposium](https://livinglfs.org/tag/symposium/)
- [american institute for Cancer research. AICR](https://livinglfs.org/tag/american-institute-for-cancer-research-aicr/)
- [Colleen Spees](https://livinglfs.org/tag/colleen-spees/)
- [diet](https://livinglfs.org/tag/diet/)
- [Garden of Hope](https://livinglfs.org/tag/garden-of-hope/)
- [Mediterranean diet](https://livinglfs.org/tag/mediterranean-diet/)
- [turmeric](https://livinglfs.org/tag/turmeric/)
- [radiation](https://livinglfs.org/tag/radiation/)
- [shark closest to the boat](https://livinglfs.org/tag/shark-closest-to-the-boat/)
- [mosaic mutation](https://livinglfs.org/tag/mosaic-mutation/)
- [mosaic TP53 mutation](https://livinglfs.org/tag/mosaic-tp53-mutation/)
- [LFS support](https://livinglfs.org/tag/lfs-support/)
- [living LFS support](https://livinglfs.org/tag/living-lfs-support/)
- [4th LFS Symposium](https://livinglfs.org/tag/4th-lfs-symposium/)
- [Dr. Fraumeni](https://livinglfs.org/tag/dr-fraumeni/)
- [Friends of Living LFS](https://livinglfs.org/tag/friends-of-living-lfs/)
- [LiFE Consortium](https://livinglfs.org/tag/life-consortium/)
- [REACH 18](https://livinglfs.org/tag/reach-18/)
- [Toronto](https://livinglfs.org/tag/toronto/)
- [travel scholarships](https://livinglfs.org/tag/travel-scholarships/)
- [Elmore](https://livinglfs.org/tag/elmore/)
- [New England Journal of Medicine](https://livinglfs.org/tag/new-england-journal-of-medicine/)
- [p53 and me](https://livinglfs.org/tag/p53-and-me/)
- [fibrohistiocytic sarcoma](https://livinglfs.org/tag/fibrohistiocytic-sarcoma/)
- [pleomorphic sarcoma](https://livinglfs.org/tag/pleomorphic-sarcoma/)
- [rhabdomyosarcoma](https://livinglfs.org/tag/rhabdomyosarcoma/)
- [2018 Conference](https://livinglfs.org/tag/2018-conference/)
- [working](https://livinglfs.org/tag/working/)
- [2019 Living LFS Family Camp](https://livinglfs.org/tag/2019-living-lfs-family-camp/)
- [research](https://livinglfs.org/tag/research/)
- [Li-Fraumeni Syndrome Study](https://livinglfs.org/tag/li-fraumeni-syndrome-study/)
- [Li-Fraumeni syndrome awareness](https://livinglfs.org/tag/li-fraumeni-syndrome-awareness/)
- [sex](https://livinglfs.org/tag/sex/)
- [hardship grants](https://livinglfs.org/tag/hardship-grants/)
- [art](https://livinglfs.org/tag/art/)
- [donations](https://livinglfs.org/tag/donations/)
- [charitable giving](https://livinglfs.org/tag/charitable-giving/)
- [previvor](https://livinglfs.org/tag/previvor/)
- [previving](https://livinglfs.org/tag/previving/)
- [cancer previvor](https://livinglfs.org/tag/cancer-previvor/)
- [resources](https://livinglfs.org/tag/resources/)

## Organization Title

- [Founder](https://livinglfs.org/organization_title/founder/)
- [Founding Member](https://livinglfs.org/organization_title/founding-member/)
- [President](https://livinglfs.org/organization_title/president/)
- [Board Member](https://livinglfs.org/organization_title/board-member/)
- [Medical Advisory Chair](https://livinglfs.org/organization_title/medical-advisory-chair/)
- [Secretary](https://livinglfs.org/organization_title/secretary/)
- [Contributor](https://livinglfs.org/organization_title/contributor/)
- [Founding Board Member](https://livinglfs.org/organization_title/founding-board-member/)
- [Vice President - Founding Member](https://livinglfs.org/organization_title/vice-president-founding-member-2/)
- [Treasurer - Founding Member](https://livinglfs.org/organization_title/treasurer-founding-member-2/)
- [Advisory Board](https://livinglfs.org/organization_title/advisory-board/)

## Event Categories

- [getaways](https://livinglfs.org/event_categories/getaways/)