Gift Establishes Eileen Youtie Predisposition Syndrome Initiative at Sylvester

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Eileen Youtie lived her life with passion and purpose. Never was that more evident than during her hard-fought battle with breast cancer. She remained positive and persevered through eight years of chemotherapy treatments and countless doctors’ appointments, channeling her energy into helping other patients and raising awareness about hereditary cancers.

Although Eileen succumbed to the disease, her efforts will endure. Through a foundation named in her honor, the Youtie family and their friends are carrying on her legacy with a significant gift to Sylvester Comprehensive Cancer Center, a part of UHealth – University of Miami Health System, where Eileen received her care, to establish the Eileen Youtie Predisposition Syndrome Initiative.

Eileen Youtie

A first-of-its-kind endeavor, the initiative will provide specialized, coordinated care to individuals diagnosed with hereditary cancer, as well as those who are predisposed and at higher risk for cancers due to inherited genetic mutations. Eileen sounded the alarm for the need to develop a concerted approach to helping patients who have genetic mutations, as she did, and she worked tirelessly to lay the groundwork for the initiative that the Eileen Youtie Foundation is now bringing to fruition.

“My mom did so much of the heavy lifting. This initiative is possible because of all the hard work she did while fighting cancer,” said Eileen’s daughter, Haleigh. “The Eileen Youtie Predisposition Syndrome Initiative is a physical manifestation of her mission and what she had selflessly been doing for so many people for so many years.”

A Legacy of Care for Others

Her family says that’s just who Eileen was, always putting others first. She dedicated her time to charity work, especially programs that benefited children, such as Women of Tomorrow, a mentor and scholarship program for at-risk high school girls in South Florida, and Larger Than Life, a nonprofit organization dedicated to improving the quality of life for children in Israel with cancer.

After her diagnosis, Eileen turned her attention to promoting breast cancer awareness and survivorship efforts, by mentoring fellow patients, helping them secure treatment plans, and ensuring they had every tool at their disposal.

“When she got cancer, she turned her commitment to giving into helping other people who were in a similar situation,” said Eileen’s son, Max. “My mom had the unique ability to always see the bright side of everything. She was always focused on giving, so we honor her legacy by giving and spreading awareness.”

Advocating for Screening, Genetic Testing

After Eileen was diagnosed with breast cancer, she discovered she carried the pathogenic BRCA1 gene. This genetic mutation, which increases the probability of developing breast or ovarian cancer, is highly prevalent in people of Ashkenazi Jewish descent, like Eileen.

Believing that her cancer outcome could have been vastly different had she been aware of her increased risk, Eileen became a passionate and vocal advocate of early screening and genetic testing. However, she quickly realized there was a severe lack of resources available after a diagnosis, and patients were left with a mountain of questions and concerns.

Patients often turned to Eileen for advice. She became a one-person hotline, answering questions the best she could. Although Eileen was always willing to share her knowledge, experiences, and resources, she knew that was not enough. She recognized the need for a comprehensive, coordinated, and medically backed program that could serve the function she did.

Under ‘One Roof’

Being the go-getter that she was, Eileen went straight to her team at Sylvester Comprehensive Cancer Center, South Florida’s only National Cancer Institute-designated cancer center. While science had advanced to the point where genetic testing could identify patients at risk of cancer, there was no interdisciplinary, coordinated care readily available to help them digest their findings and navigate possible interventions. Eileen envisioned creating an approach where patient care is facilitated, coordinated, and truly personalized for those with genetic mutations or hereditary cancer.

This concept — of putting under “one roof” a team of genetics specialists, cancer care providers, a psychologist, fertility specialist, navigator, and other professionals dedicated to serving this unique patient population — will soon be launching at Sylvester Comprehensive Cancer Center as the Eileen Youtie Predisposition Syndrome Initiative.

“Eileen would never take no for an answer, and neither will we,” said her husband, Phil Youtie. “She started this incredible project to ensure other patients get the care and resources they need, and it is our privilege to see it come to life."

Initiative Will Help Sylvester Advance Previvorship

Carmen Calfa, M.D., Eileen’s breast medical oncologist and medical co-director for the cancer survivorship program at Sylvester, is working with the family on the initiative. She considers it an honor to have been able to care for a dynamic visionary like Eileen.

“Through Eileen’s idea, Sylvester is going to lead the efforts in the country to not only diagnose those that have a genetic predisposition, but also to care for them under the Sylvester roof with the expertise that we have and move the research field forward in previvorship, as well as survivorship,” said Dr. Calfa, explaining that previvors are “survivors” of a predisposition to cancer diagnosis, who are at increased risk but have not had the disease. “This initiative is going to be at the core of our efforts to diagnose cancer as early as possible, prevent as many cancers as we can, and positively impact not only the patient but their family members and future generations.”

"Sylvester's mission has always been to pioneer groundbreaking cancer research, innovate, and advance cancer cures. This initiative will allow us to take that one step further and help prevent cancer before it happens," said Stephen D. Nimer, M.D., director of Sylvester Comprehensive Cancer Center, Oscar de la Renta Endowed Chair in cancer research, executive dean for research, professor of medicine, biochemistry and molecular biology at the Miller School of Medicine, and professor of chemical, environmental and materials engineering at the University of Miami. “We are genuinely grateful to the Youtie family and their friends for allowing us to pursue this vital aspect of cancer care.”

While Eileen’s family will forever feel the loss of their incredible mother and wife, they happily carry the torch of her tireless advocacy and longtime support for patients with hereditary cancer and genetic predispositions to cancer.

“I hope the Eileen Youtie Predisposition Syndrome Initiative becomes the norm in hospitals around the country. Hereditary cancers are not the most prevalent, but they are the most preventable,” said Haleigh. “My mom always said if we can save even one life, then all this was worth it and, frankly, I know we can save so many.”

For more information, contact Kathryn Ciempa at k.ciempa@med.miami.edu or the Eileen Youtie Foundation at haleighyoutie@gmail.com.

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