Congratulations to Founders Caroline and Trey Winslett of WARD’S Foundation! They are the 2024 Hope Award recipient for Charlotte Business Journal’s Health Care Heroes Awards Program. They are incredibly grateful for this amazing recognition in the community and for the unwavering support the Foundation has received. Caroline and Trey remain steadfast in their mission of serving rare disease families.

Please see below for their interview with Charlotte Business Journal and click here to read more about the event:  

https://www.bizjournals.com/charlotte/news/2024/09/13/health-care-heroes-event-medicine-doctors-nurses.html

Describe your job and main responsibilities and/or what the organization does.

What we do can be found right in the name of our organization. WARD’S Foundation uses our son Ward’s name as an acronym — Working to Advance Rare Disease Support. In our work, we aim to educate, support and improve the overall patient experience for families facing rare disease.

Our first major initiative was raising money to provide seed funding to establish a clinical home with coordinated care for rare-disease families in Charlotte. We are proud to say The Ward Winslett Center for Complex Care and Rare Diseases is now open and serving patients and families at Atrium Health’s Levine Children’s Hospital.  

As we continue to grow, we hope to provide greater family support and crisis navigation for families navigating rare diseases. We aim to provide more connection, community and resources for families who often feel completely helpless and alone.

What’s your favorite part of the job?

Making connections. We love meeting and interacting with other rare-disease families, witnessing their journeys, connecting them with other families and providing support where we can.

Why did you choose health care for a career or focus of your work?

Our son, Henry Edward (Ward) Winslett IV was diagnosed with Gaucher’s Disease when he was 6 months old. There are varying levels of severity, and Ward had the most rare type that begins in infancy and is usually fatal by age 2. There is no cure. Proving this devastatingly true, Ward passed away shortly after his first birthday. This devastating time in our lives is what inspired us to provide the support and services other rare-disease families desperately need and deserve. We know how hard this was for us with many advantages and couldn’t imagine what it would be like for those that do not have those. If we can make the journey for other families even just a little bit easier, we could leave this world a better place than we found it.

If you could change one thing to improve health care in our community, what would it be?

Coordination. By design, health care is currently delivered in silos with very little coordination and communication across various providers and community resources. One of the key tenets of WARD’S Foundation is to help improve coordination — not only within the medical system, but also to the many community resources that exist to help families.

What is your superpower?

Vision. The ability to see through a lens that imagines what could be, not what is.