About Our Founder

Stefanie Worth is a mom of three young adult children, including her Winged Warrior Thomas, who lost his life to complications of sickle cell in September of 2023 at 26 years old. She has spent most of her professional career improving lives through nonprofit leadership roles that educate, empower, and drive life-changing action in health spaces.

 

Stefanie has accrued more than 30 years of knowledge around community need and thrives on creating mutually beneficial partnerships that lift the voices and meet the needs of underserved individuals. Her multi-sector advocacy work includes serving constituents as a City Council staffer, mobilizing volunteers around legislation for the American Diabetes and American Heart Associations, working to change insurance requirements around sickle cell patients’ access to medication, and serving on Michigan’s Health Can’t Wait Coalition. Intertwined with those efforts has been work as a communications and brand director, board member and leader, operations and executive director, employee cheerleader, successful grant writer and fundraiser, and more. Training as a journalist taught her to quickly assess, absorb, and adapt to new situations. Utilizing that knack in nonprofit has made Stefanie a serial innovator, designing unique, impactful solutions to both nagging and emerging problems in nearly every position she’s held. Her work has earned recognition across entities for writing, communicating, strategizing, and organizing.

 

She had the incredibly fulfilling opportunity to combine these experiences in the year she spent as Director of Operations & Outreach for the Sickle Cell Disease Association of America – Michigan Chapter. Her most notable creation was the SAFER emergency room initiative for sickle cell patients. She also led the agency’s 2020 Virtual Sickle Cell Matters Walk, raising more money than any of the agency’s prior events. These successes reflect an ability to authentically meet people where they are and lean into areas where she both makes a difference in people’s lives and learns along the way. Stefanie leads with empathy gained through experience and her life’s work is making life better for the people around her.

 

After Thomas passed away, Stefanie quickly noticed a gap in the sickle cell community: grief services – specifically related to those individuals who begin or continue to advocate through their loss. This speaks to often unspoken needs around mental health support and acknowledging the number of people who die from sickle cell every day – despite science, research, and medical advances. Recognizing these factors also led Stefanie to revive and revise the idea behind her original emergency room initiative, reintroducing the effort as STAT – a guideline-based program to improve quality care. And so, she formalized her energy and efforts by creating Voices of Winged Warriors, her vow to fight for the life Thomas deserved.

 

These are critical times in the sickle cell community, at the crux of awareness, activism, science, and a tenuous but hopeful future. VoWW is determined to build on pediatric successes, interrupt the disruption of adult transition, celebrate long-timers who’ve beat the odds, and help push science far beyond its social constraints. Creating lasting change in the sickle cell space will require heightened discernment, courage, and community prowess from patients and their allies.

 

Stefanie brings the breadth and depth of skills necessary to lead Voices of Winged Warriors in achieving its strategic goals to positively impact and transform the lives of individuals living with sickle cell disease. She looks forward to collaborating with others in this space.