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October is Breast Cancer Awareness Month, and to mark the occasion, Bio.News has partnered with the Tigerlily Foundation to explore how they developed their advocacy. Maimah Karmo writes of how her own battle with breast cancer has grown into a national movement redefining women’s health equity and showing the power of patient advocacy to evoke positive change and progress.
When I was diagnosed with breast cancer at 32, my daughter was an infant. I had found the lump long before, but had been told that I was too young and to come back when I was older. After pushing for a mammogram, I was told that the lump was only a cyst, and finally, after getting a biopsy that I had pushed for as well, I learned that I had triple-negative breast cancer – a kind of breast cancer that had no targeted treatment, yet that was found more often in Black women and younger women. I remember praying that I’d live long enough to raise her, to see her grow up, to give her a world where her health, her voice, and her dreams would not be defined by her zip code, her age, or the color of her skin. I also knew that prayer without deeds would mean nothing.
That moment changed everything. I made a promise to God that if I lived, I would devote my life to creating a world where women, especially young women and women of color, would have access to the information, care, and community they deserve.
That promise became Tigerlily Foundation.
What started as one woman’s passion has become a heart-centered movement, a living, breathing legacy of advocacy, innovation, and love.
From Breast Cancer Advocacy to Women’s Health and Oncology Equity
When I founded Tigerlily in 2006, our mission was to help young women diagnosed with breast cancer find support and hope. I didn’t want anyone going through what I went through alone: being dismissed by a healthcare system that didn’t care to hear our voice or learn how our genetics, lived experience, and socio-economic differences impacted our very lives. Over the years, I realized that advocacy had to evolve. Health equity isn’t only about surviving disease; it’s about transforming the systems that decide who gets care and who doesn’t.
Today, Tigerlily has expanded beyond breast cancer to become a women’s health oncology organization. Our programs include strategic initiatives around education, advocacy, empowerment, and support, and span clinical trials, research, policy advocacy, patient navigation, science, community engagement, and youth empowerment, ensuring women are represented, respected, and resourced across the entire continuum of care.
Our work expands from the exam room to Capitol Hill to now clinical trial sites—all informed by patients and for patients.
Passing the Torch: The Power of the ANGEL Community
Over the past 19 years, we’ve built something extraordinary, a national network of ANGEL Advocates: women who have been touched by cancer and are transforming that experience into purpose. Our ANGELs don’t wait for change; they are the change.
Through our ANGEL Advocacy Program, we’ve trained hundreds of women in advocacy, clinical trial literacy, community engagement, policy, science, research, health literacy, and health equity leadership. Many now sit on research boards, collaborate with scientists, and partner with pharmaceutical and academic leaders to ensure that real women’s voices shape innovation.
We’ve reached more than 7 million Black and Brown patients nationwide in the past two years, reminding the world that our lives are not afterthoughts; they are data, they are leadership, and they are legacy. When I see the impact Tigerlily has made, I am proud and wistful. I think about the doctors who dismissed me and the people who didn’t think my voice mattered when I began this organization. All they saw was a young, single Black mother who was just a patient. Well, look what ‘just a patient’ has done, and how she has empowered and uplifted millions over 19 years. NO ONE is ‘just’ a patient.
A New Generation Rising: The ANGEL Empowerment Lab
What fills my heart with hope is seeing how this mission is being carried forward by all generations, particularly the next generation of leaders.
Clara Christenson, a young woman from Brazil, now manages our ANGEL Program, ensuring that every advocate, from newly diagnosed patients to seasoned community leaders, feels equipped and inspired to lead. Clara brings a global lens and a sense of grace to this work, reminding us that health equity knows no borders. Her leadership reflects what I’ve always believed: that when you give young women the space to lead, they will move mountains.
Marita Coker, another young lady who began her Tigerlily journey as a volunteer at age 12, now leads our ANGEL Empowerment Lab, training college students nationwide in advocacy, self-empowerment, and health literacy. Through partnerships with organizations like Zeta Phi Beta Sorority, Inc., she’s shaping a new era of equity-centered student leaders who understand that advocacy begins long before a diagnosis, it begins with awareness, representation, and choice.
These women remind me daily that legacy is not something you leave it’s something you build, together, in real time.
As Marita says, “We are building the future of empowered youth that will carry this mission forward, one student, one campus at a time.”
Rewriting the Rules of Research: Clinical Trials and Trust
Too often, women, especially Black and Brown women, have been left out of research that determines their treatment and their futures. That’s why Tigerlily launched our Clinical Trials Community Initiative, built on our I AM INCLUDED framework.
Through a partnership with Pfizer, our team, including trained ANGEL Advocates, is bringing trusted, culturally responsive education about clinical trials directly into communities
We’re hosting health fairs, workshops, and community conversations within miles of active research sites, ensuring women know that they belong in these studies. Representation saves lives, and inclusion in science must never be optional.
Policy as a Form of Love: The HEAL Center of Excellence
At Tigerlily, we believe advocacy doesn’t end with awareness; it extends into action. Through our Health Equity Advocacy and Leadership (HEAL) Policy Center of Excellence, we’re ensuring that patient voices shape the laws and systems that govern access to care.
We’re taking on issues like Prescription Drug Affordability Boards (PDABs), 340B protections, and Inflation Reduction Act (IRA) reforms, ensuring that lifesaving treatments aren’t limited by income or insurance. Through our Policy Advocate Trainings, Hill Days, and national HEAL Policy Forums, we’re equipping our community with the tools to speak directly to power because policy isn’t just politics; it’s personal.
The Heartbeat of Tigerlily: Noelle
If Tigerlily is my legacy, my daughter Noelle Karmo is its living heartbeat.
She has been by my side through every season of this journey, from stuffing envelopes at our kitchen table when she was a child, to going door to door with me to raise funds, beginning our first youth education event, Pajama Glam, running our Hope Box Program, to now helping to lead outreach and engagement across all our programs.
Noelle is not only my rock, she is the embodiment of why I do what I do, and has been my beacon all the way. She is the embodiment of what I want young women to see is possible—to live in a world where their dreams and heart’s desires make a difference. Being alive and having these years of life together is what I want for all women—and more. Her presence reminds me that Tigerlily was never just about surviving breast cancer; it was about creating a world where daughters like her and like yours inherit health, hope, and possibility.
She is the continuation of everything Tigerlily stands for: love, resilience, and the belief that one person’s story can ignite a movement.
The Legacy Continues
As I look at Clara, Marita, Noelle, and the countless ANGELs leading across the nation, I see a future where our daughters won’t just survive, they’ll thrive.
They will walk into clinics, boardrooms, and legislative chambers knowing they belong. They will lead with empathy, guided by science and spirit, and they will continue what we began, transforming the culture of women’s health into one of power, purpose, and partnership.
This is what legacy looks like.
And we’re just getting started. Look what we can do when we lead with love, legacy and unstoppable faith.
Whether you’re a survivor, student, policymaker, or ally, you are part of this story.
To get involved, visit www.tigerlilyfoundation.org or contact Marita Coker, at marita@tigerlilyfoundation.org.
