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Living fearless: black, female ceo empowers breast cancer survivors, tackles disparities in healthcare

Maimah Karmo is a stage II breast cancer survivor, founder, and CEO who is fearlessly pouring into her life’s purpose in a world that is stacked against Black women’s health.

Back in 2006, the dynamic mastermind behind the Tigerlily Foundation was diagnosed with triple- negative breast cancer – one that is more aggressive and deadly in young and Black women.

17 years later, Karmo has become a passionate leader in women’s health, creating and carrying out national health initiatives for women and girls, with the goal of eliminating disparities of age, stage, and color.

“FROM BEING TOLD I WAS TOO YOUNG, TO HAVING TO PUSH FOR A MAMMOGRAM, THEN HAVING IT COME BACK CLEAN – EVEN THOUGH I COULD STILL FEEL THE LUMP; HAVING TO PUSH FOR A BIOPSY FOR MONTHS AND BEING DENIED,” KARMO TOLD BLACK ENTERPRISE.

“There were so many statistics telling me as a young woman and a Black woman that the odds were against me. I refused to accept that for myself, other women and future generations, so I began to work to empower women and girls, to change thinking, framing and disrupt systems that are not working for us,” she added.

Tigerlily Foundation, whose mission is to educate, advocate for, empower, and support young women, before, during, and after breast cancer, has since launched the #InclusionPledge, driven education to millions of people through digital programs, including Breathe TV and our My Life Matters Magazine and more.

“I BEGAN TIGERLILY WHILE IN TREATMENT AT 32 YEARS OLD, WITH NO MONEY, RESOURCES OR TRAINING AND HAVE BUILT IT INTO A GRASSROOTS, COMMUNITY BASED ORGANIZATION, WITH A NATIONAL AND GLOBAL FOOTPRINT,” KARMO RECALLED.

Passionately, Karmo, a Congressional Black Caucus’s Leadership in Advocacy Award winner, shared more with BLACK ENTERPRISE about her transition from diagnosis to health champion.

What is your life’s purpose?

My life’s purpose is to ensure that families have every opportunity to live a full life, with equitable access to all the opportunities this world affords, with a specific focus on health equity, access, improved medicines for patients, supportive care and respect for people as they navigate their life and healthcare journey.

How did you discover your fearlessness through breast cancer?

After getting diagnosed, I was shocked, scared and overwhelmed. I had two choices – to accept what I’d been told – that I had an average of 5 years for recurrence and possibly death; or I could create my life on my own terms and use this challenge as a gift.

Looking back, I had the fearlessness in me all along, I just didn’t know it, but this is why we have to always tell ourselves the right story – how we talk to ourselves, see and believe in ourselves is key to success. Even when people didn’t believe, I did and I was relentless in pursuit of my goal of amplifying young women’s voices and changing policies, systems, and how and when we educate the community.

What was going on through your mind to inspire Tigerlily?

After finally getting the biopsy and the diagnosis of Triple Negative Breast Cancer, I knew that I had to do something to make a difference. I didn’t know what, but I asked God to guide me and I listened. I also believe that service is the rent we pay for living and as long as I am alive, I had to do something to change the outcomes that younger and Black women were facing.

Describe your experience as a Black female executive and breast cancer survivor in women’s health?

I spent 14 years working a full-time job, single parenting and building Tigerlily full-time, and people wouldn’t fund me. No one was teaching me how to grow, and I kept hearing that I was small and a one- person show, but how do you grow when you’re getting pennies and others are getting millions.

As a Black woman, the foot on my neck were companies that held the purse strings who said they were working towards equity, but wouldn’t support a patient driven organization with the lived experiences and trust from the community that I had. I didn’t give up and I kept building and showing up at places and somehow, God kept giving me these platforms – even the Oprah Winfrey Show, but I still wasn’t getting funding.

What challenges have you witnessed affecting young Black women with breast cancer?

One of the things that is most egregious is the lack of treatment options for Black women. So not only are we not seeing people who look like us in breast health campaigns, we are not offered clinical trials, we are experiencing delays in diagnosis – often because we are dismissed by providers; there is the issue of underinsurance; then when finally diagnosed the disease tends to be more advanced, which means aggressive treatment, but most often a recurrence and death… not to mention the toll on our families.

Why is it important as a Black woman to sit on the Federal Advisory Committee on Breast Cancer?

It’s amazing to look back and see that a conversation that started in Congresswoman Wasserman Schultz’s office led to the EARLY Act, put me at a table where I could make change, and to know that my efforts have improved the journey and outcomes for millions of young women.

Being on the Committee allowed me to represent the Black woman’s perspective and lived experiences – one that had been stifled or ignored for so long.

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