Disruptors. They are the few and the fierce. In our series, Leading between the Lines, we have the opportunity, and the pleasure, of meeting with some of South Florida’s most dynamic female business leaders, ones who are disrupting their industry, approaching things in a new way, solving new problems, and effectively pushing the status quo into a new frontier. We want to learn about their journey, what it really takes, what they’re actually up against, and how it feels each step along the way. 

In this special edition of Leading between the Lines, we had the privilege of speaking to a woman whose story is sure to inspire you to live every day on purpose. She balances personal and professional life alongside a lifelong battle against cancer due to a rare genetic mutation called Li-Fraumeni Syndrome. Meet Lainie Jones, 6-time cancer survivor at the young age of 40, and Associate Director for the American Cancer Society.

Read our full interview to learn more about Lainie’s journey of perseverance and what it really means to live on purpose.

Romi: What is Li-Fraumeni Syndrome and TP53 mutation?  What should people know about this? 

Lainie: Li-Fraumeni Syndrome is a genetic disorder often referred to as the "ticking time bomb". It is a mutation in the TP53 tumor suppressor gene which causes a more than 90% chance of developing cancer anywhere in the body and at any age. Although I only underwent genetic testing after my fourth cancer—admittedly late—it has played a crucial role in saving my life today. The awareness of my genetic mutation has prompted more aggressive screening and enabled the early detection of all my cancers thereafter. This underscores a vital truth: Early detection saves lives! And genetic testing can be a life-saving tool that facilitates early detection!

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Romi: What have been some of your biggest challenges along the way since your first cancer diagnosis and subsequent Li-Fraumeni Syndrome diagnosis? What have these challenges taught you about yourself?

Lainie: For me, cancer tends to arrive at inconvenient times, like two months before my wedding or three weeks before my big 40th birthday trip to Tokyo. Due to my genetic predisposition, I live life in three-month increments, on the edge until my next screening. Beyond cancer, I inherently view challenge as adventure. This outlook has helped me during some of my most challenging moments. I genuinely believe everything happens for a reason, and I am on this adventure for a reason. I am grateful for life every day and I live every day like it's my first. 

Romi: What has surprised you most on this adventure?  

Lainie: How I am able to stay so positive everyday. My mentality is- when life gives you all the reasons to be negative, think of all the reasons to be positive.  

Romi: You truly do maintain such a level of positivity and even humor about what you go through. It’s remarkable!  What do you tap into to stay so positive? How are you able to maintain positivity and humor in the face of such adversity?

Lainie: A positive attitude accounts for 90% of the battle. My husband has been my steadfast companion since we were twenty years old. He is my rock. He has stood by me every step of the way, playing a significant role in helping me maintain my daily positivity. The same goes for the rest of my family. Interestingly enough, I am not the only cancer “thriver” in my family. My parents are also both survivors and I have to say, being a caregiver is harder than being the patient. It’s incredibly difficult to watch someone you love suffer, but we have also found strength in each other and we face these battles together. I am so grateful for my family and the strength they give me and eachother everyday. As well as the humor! Our best medicine is to find laughter amidst the challenges. With only one life to live and cancer being a part of my life journey, we have no choice but to infuse "CAN" into cancer and conquer it. Humor is a big part of that. 

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Romi: That’s an amazing outlook! Is there anything that scares you? 

Lainie: The only thing that scares me is cilantro, scary movies, crazy roller coasters. 

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Romi: What is the biggest misconception people have about you when they find out that you are a 6-time cancer survivor?  

Lainie: I consider myself a “normal” person (depending on how you define normal). I understand that people might find it challenging to support a friend or loved one with cancer because they're unsure of what to say or do, and that's perfectly okay. Personally, I believe there's never a bad question to ask me—the only bad question is the one left unasked. I always hope that sharing my cancer journey not only saves lives but also inspires others to prioritize screenings and not postpone their check-ups. 

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Romi: You certainly haven’t let a little thing like cancer stop you from living your life to the fullest! And in doing so, you’ve managed to build an incredible career, currently serving as Associate Director with the American Cancer Society. What does it feel like to work for ACS given your personal experience with cancer?  What does that mean to you? 

Lainie: My journey to ACS was definitely personal. In my early twenties, I was actually pursuing my dream of becoming a nurse, focusing on pediatric oncology inspired by my own survival from adrenal cancer at 18 months old. My enthusiasm for starting nursing school ultimately saved my life. After initially neglecting an ultrasound script for a lump I had felt, I was motivated to book the appointment as an aspiring medical professional. Two weeks before my 25^th birthday I received a birthday gift you never wish for- a breast cancer diagnosis. My path shifted from nursing school to a battle for survival. 

The motivation to join the American Cancer Society emerged during my recovery from a double mastectomy. This required some paperwork, as you can imagine, but I never expected a personal response from checking a box on a hospital form. Yet, within 48 hours, a call from a 60-year-old breast cancer survivor through the American Cancer Society Reach to Recovery Program  filled me with HOPE. Her positivity became my anchor, sparking the realization that if she could overcome cancer at 60, I could at 24. Determined, I pledged to work for the American Cancer Society after I was done with my treatment, so that I could give the same hope to someone else on their cancer journey. ACS played a pivotal role during my toughest days. The rest, as they say, is history. 

Romi: What has been your proudest achievement? 

Lainie: One of my most significant accomplishments with the American Cancer Society was my involvement in recruiting participants for the Cancer Prevention Study-3 in 2013. In collaboration with others in South Florida, our mission was to enlist 2500 individuals aged 30-65, who had never been diagnosed with cancer in the Tri-County area. 

We established host sites where volunteers could contribute blood samples, initiating a follow-up process through surveys spanning two to three decades. CPS-3, a longitudinal, prospective cohort study, focuses on gathering data from a cancer-free cohort, making it a prospective study. This approach involves collecting data over many years, with participants sharing insights through surveys and biological samples. The overarching goal is to enhance our understanding of why certain individuals develop cancer while others remain cancer-free. 

The anticipation of the study's outcomes and its potential impact on eradicating cancer is exciting. As a cancer patient, it was particularly meaningful to witness individuals who had never experienced cancer actively contributing to shaping the future of cancer research and prevention.

Romi: What does the future look like for those living with TP53? Are there medical advancements in treatments and medications available that may not have been available when you were first diagnosed?

Lainie: I always say it’s a good time to have cancer. The treatments are so advanced and there are so many options out there and new ones being created everyday. That’s due in part to organizations like the American Cancer Society. Did you know? The American Cancer Society is the largest funder of cancer research next to the federal government. Fun fact: I take a drug called Herceptin every 21 days for the rest of my life to keep my breast cancer dormant and that drug was funded by the American Cancer Society. So, the work I do each day is saving my own life and millions of others. That’s pretty freaking awesome!

Romi: That’s amazing! Talk about a full circle moment! Your story is so inspiring. Thank you for sharing it with me and our audience.  So tell us, what are your goals currently- what’s next on the horizon for you, Lainie?

Lainie: Well I just turned 40 years old and WOW- that is a goal in and of itself! Especially with undergoing treatment for a brain tumor diagnosis only weeks before this milestone birthday! Professionally, my goal is to really grow in my current career to ensure I am an amazing People Leader and help support my team to be the best version of themselves. It makes me so proud to lead a team who is just as passionate as I am. A personal goal of mine, always, is to be able to support others like me in facing their own diagnosis. I always say, my diagnosis is my purpose and I try to lead by example, educating on the importance of early detection, encouraging people to be proactive about their healthcare, and helping infuse humor and hope for those battling cancer. Aside from that, I hope to start collecting other things besides new cancers- particularly stamps in my passport!

If you would like to support the American Cancer Society, join Lainie and The Daily Drip team at the 3rd Annual Fork Cancer Event taking place on Thursday, April 18, 2024 at the Norton Museum of Art.

The evening brings together the best of Palm Beach's vibrant food, cocktail, and entertainment scenes for one night to benefit the American Cancer Society, as well as recognize and celebrate the fundraising efforts of their Honorees, South Florida leaders that have joined ACS in the fight against cancer. 

Funds raised by Fork Cancer support the mission of the American Cancer Society to improve the lives of people with cancer and their families through advocacy, research, and patient support, to ensure everyone has an opportunity to prevent, detect, treat, and survive cancer.