RARE Daily

Levine Children’s Hospital Receives $1 Million Gift for Rare Disease Center

March 1, 2022

‍WARD’s Foundation made a $1 million gift to Atrium Health Levine Children’s Hospital in Charlotte, North Carolina to help advance the care of rare disease patients.

Photo: Caroline, Trey, and Ward Winslett

The gift honors Ward Winslett, the first-born child of WARD’S Foundation cofounders Caroline and Trey Winslett. Ward lost his life to the rare disease Type 2 Gaucher’s in October 2020, just six days shy of his 13-month birthday. In January 2021, they Winslett’s 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.

“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.”

In recognition of the gift from WARD’S Foundation—announced 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. The Medical Plaza is currently undergoing a complete renovation, projected for completion in the next two years. The outpatient center will serve more than 40 counties, offering efficient coordinated care and a support system for families who are navigating the complexities of living with a rare disease.

The center will provide 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 time with their children. 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.”

Ward was seven months old when he was diagnosed with type 2 Gaucher’s disease, 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.” 

Author: Rare Daily Staff

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