Program Brings Hope to Those with a Hereditary Genetic Predisposition to Cancer
With the opening of the Eileen Youtie Predisposition Syndrome Initiative, Sylvester Comprehensive Cancer Center, a part of UHealth – University of Miami Health System, is underscoring the importance of genetic testing, counseling, and cancer care. Through this initiative, Sylvester experts will provide specialized, coordinated care to individuals diagnosed with hereditary cancer and those predisposed and at higher risk for cancers due to inherited genetic mutations.
Eileen Youtie was a motivated and spirited Sylvester patient who, after being diagnosed with breast cancer, wanted to see how she could garner support for other patients who had genetic mutations as she did. She carried the pathogenic BRCA1 gene.
Throughout her treatment for breast cancer, Eileen worked tirelessly to lay the groundwork for the initiative. After she passed away, her family picked up the torch and continued her mission, helping launch the advocacy program that bears her name.
Eileen’s husband, Phil, and children, Haleigh and Max, shared the honor of cutting a ceremonial ribbon to officially open the Eileen Youtie Predisposition Syndrome Initiative. They were joined by Carmen Calfa, M.D., Eileen’s breast medical oncologist and the medical co-director for the cancer survivorship program at Sylvester, who worked closely with the family on the initiative; Gilberto de Lima Lopes, M.D., chief of the Division of Medical Oncology and associate director for global oncology at Sylvester; and Mustafa Tekin, M.D., interim chair of the Department of Human Genetics and director of the Division of Clinical and Translational Genetics in the Dr. John T. Macdonald Department of Human Genetics and the John P. Hussman Institute for Human Genomics.
They were later joined by Sylvester supporters, physicians, and researchers at a reception to honor the milestone. In welcoming the distinguished guests, Dr. Lopes spoke fondly of Eileen, calling her a dynamic visionary and a force of nature.
“She advocated for a way to spread awareness to those with increased risk through early genetic testing and screening, and to make sure their care continued in one location,” said Dr. Lopes. “As a result, Sylvester now has a team dedicated to coordinating, facilitating, and personalizing screening and care for those at risk of a predisposition to hereditary cancer. “Eileen’s passion is going to lead to pioneering cancer research and care that will save lives.”
‘Fulfilling Her Wildest Dreams’
Speaking on behalf of her family, Haleigh Youtie noted the herculean effort it took to launch the initiative within a year, calling it a remarkable accomplishment on behalf of all those involved, especially Dr. Calfa and Katy Ciempa, senior director of development for Sylvester, who had been working closely with Eileen on the groundwork to establish the predisposition syndrome initiative.
“I am overjoyed—or “verklempt,” as my mom would say—to be here with you all, fulfilling her wildest dreams with the opening of the Eileen Youtie Predisposition Syndrome Initiative, fueled by the love of all the people she loved the most,” said Haleigh. “My mom lived her life to help others, and from the day she was diagnosed, she always said if she was able to save one life because of it, then it will all have been worth it. I know with this initiative we are going to save many more lives than that.”
As a breast oncologist, Dr. Calfa recognizes the potential the Eileen Youtie Predisposition Syndrome Initiative will have on cancer patients and their families.
“Eileen was a great advocate for genetic testing and universal testing for those at high risk,” said Dr. Calfa. “Thankfully, she was able to see how impactful her advocacy was in her lifetime. She desired patients to have access not only to testing but also to experts and options readily available to help with important next steps and/or prevention. That is what this initiative, named in her honor, will do.”
Dr. Tekin, a renowned geneticist, shares the excitement about the possibilities the Predisposition Syndrome Initiative will bring to cancer research. “Every human disease has a genetic component, and cancer is no exception,” said Dr. Tekin. “Through advanced genetic testing, we find those genetic mutations and screen family members to identify people at risk. This initiative will help us advance our program.”
Importance of Family History, Cancer Genetics
Emphasizing Sylvester’s relentless pursuit of a cure, Stephen D. Nimer, M.D., director of Sylvester Comprehensive Cancer Center, explained how the Eileen Youtie Predisposition Syndrome Initiative supports Sylvester’s overall mission.
“It’s very important to raise awareness about family history, familial cancers, and the steps one can take to prevent cancer,” said Dr. Nimer, who is also the Oscar de la Renta Endowed Chair in cancer research, executive dean for research, and professor of medicine, biochemistry, and molecular biology at the Miller School of Medicine. “At Sylvester, we have leading scientists in the world that study cancer genetics, and incredible counselors and clinicians to care for our patients. Here, we do not just care about the cancer, we take a holistic approach to care for the whole person. The patient-first Eileen Youtie initiative continues to help us do just that.”
Congresswoman Debbie Wasserman Schultz was among the dignitaries in attendance at the celebration. A breast cancer survivor and BRCA2 carrier, Rep. Wasserman Schultz helped pass the Education and Awareness Requires Learning Young Act, or EARLY Act, a national awareness campaign targeted at young and high-risk women. This includes Ashkenazi Jewish women, like herself and Eileen Youtie, who are five times more likely to have a breast cancer mutation.
“I am so thrilled that this program is being launched,” said Rep. Wasserman Schultz. “I know there are many more discoveries that the amazing Sylvester Comprehensive Cancer Center will continue to make to ensure that we can one day bring an end to the tragedy of cancer while increasing our focus on improving survivorship."