One in 10 Americans has a rare disease, and 90% of those diseases have no FDA-approved treatment. Children with rare diseases require seven times more office visits than their peers and account for one-third of all pediatric healthcare spending.
CHARLOTTE, N.C., February 28, 2022 – Atrium Health Foundation has received a $1 million gift from Charlotte-based WARD’S Foundation to help further advance the care of rare disease patients at Atrium Health Levine Children’s. The gift honors Ward Winslett, the first-born child of WARD’S Foundation cofounders Caroline and Trey Winslett. Ward lost his life to a rare disease in October 2020, just six days shy of his 13-month birthday.
The Winsletts turned their heartbreak into determination, driven by their wish to inspire hope in other families facing a similar diagnosis. In January 2021, they established WARD’S Foundation (Working to Advance Rare Disease Support) with the mission of educating, supporting, and improving the overall patient experience for families facing rare disease.
In recognition of the gift from WARD’S Foundation – announced today to coincide with National Rare Disease Day – the Ward Winslett Center for Pediatric Rare Disease will be created on the sixth floor of the Levine Children’s Medical Plaza on Blythe Boulevard. The Medical Plaza is currently undergoing a complete renovation, projected for completion in the next two years. The outpatient center will serve over 40 counties, offering efficient, coordinated care and a support system for families who are navigating the complexities of living with a rare disease.
Ward was seven months old when he was diagnosed with Type II Gaucher’s Disease (pronounced go-SHAY), a rare disease that occurs in one in 100,000 individuals and has varying levels of severity. Ward had the rare type that presents in infancy and is usually fatal by age two.
“And so began our diagnostic odyssey,” said Caroline Winslett, who explained that she and Trey spent hours each day learning as much as possible about Ward’s disease. “It was an incredibly traumatic experience, and what we learned is that when a rare disease strikes, it takes a village.”
Thanks to the generosity of Caroline, Trey, and WARD’S Foundation, that village will expand to support families across the Carolinas. “The Ward Winslett Center for Pediatric Rare Disease will provide our patients with access to an array of services under one roof, ensuring that families like the Winsletts spend less time traveling and in appointments, and more quality time with their children,” said Ashley Chadha, MD, specialty medical director at Levine Children’s. “In addition to meeting the clinical needs of families, the Center will serve as the catalyst for innovation in quality improvement, research, and education to support foundational change in the delivery of care for patients with rare diseases.”
When it opens in 2024, the Ward Winslett Center for Pediatric Rare Disease will join other specialty centers such as the HEARTest Yard Congenital Heart Center (which opened last year), the John and Donna Justice Pulmonary Diagnostic Center, Torrey Hemby Center (Oncology), and the Nephrology Center of Excellence, among 30 other specialty practices. Funding from the WARD’S Foundation gift will enable the Center to build upon its core staff, emphasizing communication, quality, operational metrics, and clinical and family support.
“With support from families like the Winsletts and others, philanthropy continues to elevate our children’s services and extend care beyond the walls of our hospital,” said Stacy Nicholson, MD, MPH, enterprise children’s service line leader for Atrium Health. “We are humbled by Caroline and Trey’s commitment to this community and to improving the lives of others who are traveling a path similar to their own.”
“We feel like we have an obligation to do this for others,” said Trey Winslett. “We want to honor Ward’s legacy by building a network of treatment options and support around the Carolinas… so no family has to go through this alone.”
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About Atrium Health Foundation
Founded in 1959, Atrium Health Foundation is one of the largest charitable foundations in Charlotte. As the point of contact for all contributions benefiting Atrium Health in the Charlotte region, the Foundation inspires transformational giving to improve health, elevate hope, and advance healing – for ALL. Through its current Giving Hope Campaign, Atrium Health Foundation is supporting Atrium Health’s efforts to create the learning health system of the future by building healthy communities, outstanding education programs, preeminent research, and exemplary facilities.
About WARD’S Foundation
WARD’S Foundation was established in January 2021 by Caroline and Trey Winslett in memory of their son, Ward, who passed away from a rare disease in October 2020. The Foundation is Working to Advance Rare Disease Support in order to improve the lives of people affected by rare diseases. Their mission is three-fold: They aim to increase the awareness, education, and prevention of rare diseases. They aspire to walk alongside families in their rare disease journey by providing resources, guidance, and support. They strive to improve the clinical, diagnostic, and overall patient experience.
About Atrium Health Levine Children’s
Atrium Health Levine Children’s Hospital is an award-winning hospital in Charlotte, NC, offering specialized pediatric medicine and 24-hour emergency care. Located on the main campus of Carolinas Medical Center, the 234-bed hospital is the most comprehensive facility of its type between Atlanta, Georgia and Washington D.C. Levine Children’s Hospital is also home to the Ricky Hendrick Centers for Intensive Care, which support pediatric intensive and cardiovascular surgery patients. Since opening in 2007, the hospital has grown to include more than 30 pediatric specialties and has consistently received national recognition from U.S. News & World Report as one of “America’s Best Children’s Hospitals.”