Libby’s Legacy Breast Cancer Foundation is working to close the gap between women who are able to access life-saving care for breast cancer and those who are not.

Toni Pressley may be well-known for her play on the field as a member of the Orlando Pride soccer team, but it’s her work away from the game that is equally inspiring.

With a desire to make a difference in the Central Florida community, Pressley aligned herself with Libby’s Legacy Breast Cancer Foundation, a local nonprofit founded by Robin Maynard-Harris after her mother, Libby, passed away from the disease. The organization’s mission is to provide comprehensive services to the underserved through education, mammograms and patient navigation on the journey from diagnosis to survivorship with the compassion to ensure no one fights alone. They want to ensure all women, whether they are uninsured or underinsured, can access vital, life-saving breast cancer screenings and treatment.

Pressley had been a volunteer for the organization, but things hit close to home when she was diagnosed with breast cancer at just 29 years of age. After facing the challenging realities and undergoing successful surgery a month later to remove the cancer, Pressley knew she wanted to increase her involvement with Libby’s Legacy. And from there, a new program called “Toni Pressley’s Kicking Breast Cancer” was born, the focus of which was to educate young women on how to know their body better and become an advocate for themselves; especially Black women who are less likely to contract breast cancer but more likely to die as a result of the disease.

While Pressley’s journey had a positive outcome, her involvement with Libby’s Legacy allowed her to recognize how fortunate she was to have the means and access to quality medical care. It’s an all too common occurrence that women’s lives end too soon because their care is delayed or they do not have access to health care at all. In fact, Central Floridians often fall into the “gap”—they make too much money to qualify for Medicaid but not enough to afford exorbitant health insurance premiums or a high deductible.

Apart from financial barriers, young women in particular face an additional hurdle: convincing doctors to take their concerns seriously. Because breast cancer is more common in women who are age 45 and older, doctors tend to overlook younger patients’ concerns. As a result, nearly 80% of young women diagnosed find their breast abnormality themselves.

In 2017, Kissimmee’s Alina Sanchez had such an experience when she discovered a lump in her breast. With great concern she contacted her obstetrician who after some urging, finally sent her for a sonogram but when the sonogram showed she needed a biopsy she could not afford the cost, having recently lost her medical coverage, the 29-year-old mother was stretched thin. She started researching and found Libby’s Legacy and they were able to help.

“I just kept having to go back to the doctor and each time it was $150 to $200,” she says. “And mind you, I’m paying for daycare. My son is in school. I have bills. It was just so hard.”

Beginning to lose hope that she’d be able to get a diagnosis and subsequently the care she needed, Sanchez reached out to Libby’s Legacy and the organization moved quickly because early detection is critical. The nonprofit paid for Sanchez’s biopsy and the test determined that she had a rare neuroendocrine tumor in her breast.

With Libby’s Legacy by her side every step of the way, Sanchez received 20 rounds of chemotherapy and had a lumpectomy. By April 2018, she was in remission. But had Sanchez not received treatment when she did, her story may have ended much differently.

As the founder of Libby’s Legacy, Maynard has seen it many times. She relates the story of a young pregnant woman in her early 30s who came to Libby’s Legacy for help. This woman’s doctor had dismissed her concerns about a lump in her breast and said hormones due to pregnancy was likely the cause for the abnormality. When the lump did not go away after she gave birth, the woman turned to Libby’s Legacy for guidance. The organization sent her for a screening and she was diagnosed with breast cancer. She received treatment, but the disease had progressed too far and she died just four years later.

“Had that doctor given her that script and listened to her about her own body, she’d probably be here today,” Maynard says.

Sanchez says her obstetrician was also dismissive about the lump in her breast, even as she felt strongly that something was wrong.

“If I feel this way, it’s for a reason,” she says. “Us women, we know our bodies.”

Libby’s Legacy makes it a priority to support women through their breast cancer diagnosis, treatment, remission and beyond. The nonprofit’s Patient Advocate Liaison Services (PALS) program is one way it helps women along their journey.

Through this program, breast cancer patients are paired with an advocate or “PAL,” who will come with them to appointments, take notes, seek answers to their questions and make sure they get what they need.

“Breast cancer is a journey,” Maynard says. “So, you need someone with you on that path to navigate you.”

While the life-saving work of Libby’s Legacy has continued through the COVID-19 pandemic, the circumstances of this year have thrown the nonprofit for a loop. Unable to raise money through events, the organization’s donations have dropped significantly. The nonprofit is lean and able to withstand this year’s setbacks thanks to sponsors like CPA firm Cregan & Co. and other long-time partners, but donations are still needed to make sure the organization can continue its important work.

Unlike large, national cancer nonprofits that retain high-paid executives, Libby’s Legacy is able to put forth 87 to 92 cents of every dollar donated to providing its services. As a result, every $100 donation covers a mammogram for someone in need.

The dedication that Libby’s Legacy has to serving women in Central Florida is evident when talking to survivors like Sanchez, who gets choked up trying to put into words how the nonprofit touched her life.

“I am so blessed that I found them,” Sanchez says. “Because of them I didn’t fight alone.”

Libby’s Legacy Breast Cancer Foundation
112 Annie St. | Orlando
407-898-1991 | LibbysLegacy.org

This article originally appeared in Orlando Family Magazine’s October 2020 issue.