We encourage, empower, and educate those living with Li-Fraumeni Syndrome by connecting them with care, resources, and others who are Living LFS.
Community – We connect those with Li-Fraumeni Syndrome to each other online and provide support every day. Cancer can be isolating and LFS even more so. Given it’s rarity, most with LFS haven’t met other mutants outside their family. In our private support group, we have members from all over the world who speak many different languages, but most importantly understand LFS. Another benefit of mutants being different time zones also means someone is usually awake to lend an online ear. We strive to make Living with LFS easier through the support network of people who understand hereditary cancer.
Compassion – We are living with LFS. We love those with LFS. No two journeys or experiences are the same. We listen, we communicate and we support. Our group is a safe place. With so many people and a variety of cancers, it is encouraging to share with others in similar situations, overcoming cancer, overcoming fear, loss and other emotional hurdles. In essence, we care for individuals affected by LFS.
Respect – We serve a diverse community and feel everyone has a right to be supported and treated fairly. LFS creeps in to every decision in our lives, not just our medical issues. Decisions about how to plan a family, chart a career, seek treatment, undergo testing, screening and limiting our risk. At Living LFS we recognize these decisions are not easy and we respect that people make tough choices. We respect each situation is unique and hard and we respect each other.
Integrity – We are open, honest and straightforward. We try to do the right thing. We focus our energy and resources on the LFS community we serve. While most of our work is done through a private online support group and is not open to public scrutiny, we are open about all the other aspects of our organization and what we do. We are working with researchers and clinicians to help connect our community to the best resources available for LFS. We also like to share the latest encouraging research.
Levity– We like to laugh. We deal with a lot of situations and challenges that are anything BUT funny. Yet somehow in it all we try to find the laughter and use it as a positive coping mechanism. At Living LFS we try to keep the focus on “living” and promote healing through a uniquely snarky brand of humor. In our support group, we affectionately call ourselves mutants and use this term as a badge of honor, respect and nod to how we try to find fun while living with a hereditary cancer syndrome.
Greg Harper, President
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 LivingLFS Facebook group. In this group, I was introduced to some of the most compassionate, supportive, and strong people who were living LFS every day. They had some answers, they listened to the venting, they provided levity and a little bit of snark, and above all they were a crutch for me during some really difficult times. When my wife’s mutation was reclassified as a “variant unknown significance” it added to the confusion but only strengthened my desire to understand, and hopefully, spread that understanding to the community.
So why am I interested in serving LivingLFS? In short, I owe.
I owe my wife the vow I made to have and to hold her in sickness and in health. It’s my responsibility to make sure we make informed decisions with her medical teams, to know current research trends, and to develop a network to fall back on to get answers to difficult questions.
I owe the LFS community. I owe them the kindness and acceptance that they showed me. To repay this debt, I dedicate my passion for solving problems, my efforts to collaborate with people smarter than me, and my time to provide help to those who need it. I commit myself to this group as they committed their time to me. It’s my goal to help move the LFS community forward and support those who are living LFS every day.
Jen Mallory, Vice President, Founder
Contact Jen: JenMallory@LivingLFS.org
I’ve learned there are many different ways to approach LFS- and the right way is the one that’s right for you. I’ve seen how much of a difference support and screening makes in our quality of life. My passion is to help others Live LFS. Living LFS is an extension of this passion, yet also fills a huge under-met need for support in our community. There were years that felt like everyone in my family had or was dying of cancer. Testing for LFS was new, my Dad tested positive. I declined testing because once you had the results, there wasn’t better screening, what was the point? Then there were the lucky, quiet years when I met the love of my life and gave normal a try. We had four kids, and although I didn’t want to be tested for LFS when my Dad was, I paid close attention to lumps, bumps and weirdisms. LFS once again became a priority when my daughter, diagnosed with adrenocortical cancer and sarcoma, also tested positive for the TP53 mutation. Then so did I, then so did our other three mini mutants. Suddenly we were mutants, party of five. Although I would never choose LFS for my children, I won’t bet against them. We live, we screen, we help others. Living LFS is about taking care of the people who are living with the syndrome until science and research find better treatments, cures, and ultimately prevention. We are a small, mighty community and Together we are Fighting Cancer and Supporting Mutants.
Trishia Shelly-Stephens, Treasurer, Founding Member
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 years old he was diagnosed with a rhabdomyosarcoma. It was at that time that I asked for genetic testing. Unfortunately genetic testing was pretty new in 1995 and we were some of the first people that were tested for Li Fraumeni Syndrome, and we were told our results were ‘inconclusive’. In 2008, when another family member was diagnosed with breast cancer, we brought up or results with a new genetic counselor. It was at this time that we found out that I did, indeed, have Li Fraumeni Syndrome and a p53 mutation. Both of my parents tested negative, so I am what is called a de novo, or spontaneous, mutation. My son tested positive.
Being officially diagnosed with LFS led me on a wild good chase for information, and there wasn’t much available. In 2009 I found a forum for LFS and was thrilled to connect with others who had LFS, or as we lovingly call each other, mutants. That connection has gotten me through some very trying times, including my son’s most recent cancer diagnosis in January.
I have always believed that our job as a human is to use the experiences in your life to help others, and I knew that having LFS was no different. To me Living LFS means not just dealing with the grim realities of having Li Fraumeni Syndrome, but actually living a full, happy and productive life with it. It means supporting others with information, a kind word, a shoulder to cry on and lots of laughter.
All of our board members fully embrace the Living LFS motto of Fighting Cancer and Supporting Mutants. We look forward to serving our community and helping us all truly LIVE LFS.
Andi Last, Secretary & Media
Contact Andi: Andi@LivingLFS.org
When my Dad was 13, his 11 year old brother, his mother and his dog all died of cancer in little more than a year. (Dad tells this story with a rueful chuckle that implies, “can you even believe this?”) By the time I was diagnosed with breast cancer in 2015 at age 41, Dad had been through multiple cancers himself. It never occurred to me that it could be genetic. I just thought our family had bad, cancery luck. Then Dad and I were diagnosed with Li-Fraumeni Syndrome. (We’re pretty sure Dad’s dog was a coincidence.)
The mind is a funny thing. The full meaning of my LFS diagnosis didn’t really sink in for me until well after my lumpectomy and chemotherapy. Once I realized that “mutants” with cancer aren’t the same as “normals” with cancer, I wanted to make sure everyone else knew. I became more active in the private LFS Facebook support group. I started educating my medical team about LFS, talking to friends about it, and making videos about it. I want it to be common knowledge that a family history of cancer may not just be bad luck, that knowing our mutant status early can save lives, and that we can help others with our unique personal experiences. We are Living LFS.
Doctors, friends, coworkers and strangers often say to LFS mutants, “I don’t know how you deal with all this!” Apparently, LFS mutant superpowers are super-human strength of character, and super-human supportiveness. I am grateful to be on the receiving end of that support from my mutant family, and grateful for the chance to offer it in some small way in return.
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 understand that whatever it meant – we were in this together (and we would joke about it!)
I was tested for LFS when I was in my early 20’s as part of a Dana Farber Cancer Institute study and refused my results. I was young, (self-proclaimed) invincible and probably a little paranoid of our health care system in the 1990’s. I went to the doctor annually and was quick to acknowledge aches and pains, so I figured “why bother” with the results. Several years after my trip to Dana Farber, my mother passed away from LFS and I watched generations of my family battle LFS. I was living in the San Francisco Bay Area and reached out to Nicki Chun and Dr. Kurian at Stanford University Medical Center for a consultation. After genetic counselling, I made the decision to be tested again – and tested negative. I was in shock. My mother, aunts, uncles, cousins, and children of cousins were almost all positive for the mutation. I was embarrassed. I wondered, “why me?” and didn’t want to tell my family. I did tell my family – and they were quick to support me, make fun of me for always being the black sheep of the family and remind me that a negative test result didn’t give me a “get out of cancer free card’ in our society. Today my family continues to battle LFS with courage, unity, hope and laughter. I am a part of this family. I am Living LFS.
I never had the opportunity to talk to my mother about her legacy, but I have to think the work being done by Living LFS would have made her proud. I am honored to be a part of this organization and look forward to offering support, resources, and a few laughs to the LFS community.
Hello, I’m DeAnn and I am a founding member of Living LFS. I’ve been actively Living LFS since my diagnosis in 2002. Living LFS is important to me because I spent ten years after my diagnosis not knowing anyone with LFS outside of my very small family. With the limited information available back then along with the lack of community, I felt incredibly isolated and worried for my future. Living LFS has created a community of people with the same questions, concerns, and stories that I have. Through this community I have learned that LFS doesn’t mean I’ve been given an expiration date. Over the past several years, I have developed the tools to be proactive in my screening and an active participant in my medical care. An initiative that is very important to me is consistent screening standards for everyone with LFS – regardless of age or gender. I learned that I had breast cancer in 2014, but because of rigorous screening it was found very, very early. Other members of my family haven’t been so lucky because of the different screening standards practiced by their physicians. My hope for Living LFS is that we continue to foster a community and empower more people affected by this mutation to feel confident taking charge of their healthcare – especially when they may know more about LFS than their medical professionals.
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 from my breasts and one from my knee. My sister also had a few cancers under her belt when we lost my dad to myelodysplastic disorder and leukemia. In March of 2011, I was diagnosed with breast cancer then had a bilateral mastectomy 3 weeks later. Like my dad, I had bone marrow issues and was being followed closely at MDAnderson Cancer Center. They recommended I get tested for several possible genetic disorders and that I start 6 months of chemotherapy. At this time we discovered my older sister and I were officially Living LFS side by side, we were both positive for the TP53 mutation. While I stayed at MDAnderson receiving radiation therapy, I figured I should have known I was a mutant with superpowers because I went through all this while caring for my 18 month old little boy. Then I found a group of ladies online who helped this crazy new diagnosis make sense to me. We shared stories with sarcastic humor and witty attitudes that helps us navigate through day to day life with a cancer syndrome. For me Living LFS helps me live every day and love life.
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 five primary cancers as well. Cancer has the innate ability to show up when you least expect it and knock the breath out of you. Having a familial cancer legacy is isolating, no one understands the generations of loss, the fear of the next diagnosis, the worry about children developing new cancers,
I believe that Living LFS has the power to bring mutants from all walks of life, living throughout the world and unite them with love and support that only a mutant could give. Living LFS is a safe community to discuss concerns, share information and support each other in the daily struggle that is Living with LFS. Friendship, laughter and humor are just as important as the latest research information. No understands LFS like those living it.
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 I can about cancer in general, genetics and the related research that is being done, all of which could benefit my family. This is why I am excited about the work that we are starting at Living LFS.
I believe that we are empowered by the connections that we make with one another on the internet. We benefit from the emotional support that we offer and receive as we live with LFS. We help each other by sharing our experiences, the ideas of our doctors, and sometimes, even by sharing the names of the incredible physicians and facilities that we have been fortunate enough to work with. But far beyond that, I believe that we can help our community by working with the researchers who are trying to understand our wonky genetic situation. I look forward to sharing some of the ideas that I come across with you on the Living LFS site (and please share interesting things with me that you come across as well!)
I am new to LFS, compared to most out there. Our LFS story began with me and I have passed it to two of my four children, who have had 6 cancers to date. But, like all parents, I strive to prepare my children to make their way in the world, while I simultaneously try to make the world a better place for them to inherit. Working with others on Living LFS is one avenue by which I can do that, and I am excited to begin.
“Passionate about research, Compassionate with Mutants.”
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 wish this was one of the things I could have hidden from her so she couldn’t have it, like the “good Barbies” and other toys I used to stash in order to keep them from her clutches. If I could go back in time, I would much rather share those than share this. But we are here now together as Mutant Sisters and making the best of it. So I will share with you a few things that I have shared with her in hopes that you too will be able to find some bright spots on your journey.
Surround yourself with POSITIVE ENERGY. A positive attitude and keeping company with positive people can and will get you through anything. Sure we all have bad days… we’re entitled, but try not to let them weigh you down.
BE SELFISH! Now is not the time for you to take care of the needs of others, they should be reminding you to take care of yourself so you can be as healthy and happy as possible.
LAUGHTER is a daily necessity. Cancer is no laughing matter, but let’s face it… isn’t everything a little bit easier when done with a smile and a little bit of giggling?
LIVE life FULLY AND COMPLETELY. Be proud of who you are and the fact that you are a fighter. Keep trying new things, meeting new people, traveling and experiencing all that life has to offer.
Living LFS is a PROUD Member of the Global Genes Rare Foundation Alliance and believes in “The Power of the Collective Impact.”