Firefly Fund Names Ray Anne Evans Executive Director as Organization Enters Its Second Decade

FOR IMMEDIATE RELEASE: September 16, 2026

CONTACT: Ray Anne Evans, rayanne@fireflyfund.org

Firefly Fund Names Ray Anne Evans Executive Director as Organization Enters Its Second Decade

Seasoned Nonprofit Leader Brings Depth of Experience in Nonprofit Sector and Patient Navigation To Propel Impact for Families Affected by Niemann-Pick Disease Type C and other Rare Diseases

AUSTIN, TX – Firefly Fund, a nonprofit organization that provides support for research and education necessary to accelerate a cure for Niemann-Pick Disease Type C (NPC) today announced the appointment of Ray Anne Evans as Executive Director. The appointment marks an important milestone as the Austin-based nonprofit enters its second decade of advancing research, advocacy, newborn screening and support for families affected by NPC, a disease often referred to as, “Childhood Alzheimer’s.”

Founded in 2016 by Pam and Chris Andrews following the diagnosis of their two daughters with NPC, Firefly Fund began with a deeply personal mission: to change what was possible for children and families facing this devastating rare disease. Over the past decade, Firefly has grown from a grassroots Texas organization into a respected voice in the national and global rare disease community.

“Ten years ago, Chris and I started Firefly with a belief that we could help change the future for children like our daughters,” said Pam Andrews, Co-Founder of Firefly Fund. “We have accomplished everything we originally set out to do and so much more. But as proud as we are of the last ten years, we believe some of Firefly’s most important work still lies ahead. Bringing Ray Anne to Firefly is not about stepping away, it is about stepping up and investing in Firefly’s bright future.”

Evans brings nearly 30 years of nonprofit leadership experience, with extensive expertise in organizational leadership, nonprofit operations, financial management, strategic planning, fundraising and community partnerships. For nearly two decades, Evans served Breast Cancer Resource Centers of Texas, ultimately as Executive Director. In that role, she partnered closely with the organization’s Board of Directors and Finance Committee while overseeing staff, programs, operations and a $1.9 million annual budget. She also brings experience that aligns closely with Firefly Fund’s commitment to patients and families. Earlier in her career, Evans served as Director of Client Services and as a certified patient navigator, giving her firsthand experience helping individuals and families navigate the complexities of serious disease.

“I am honored to join Firefly Fund and to become part of an organization with such a powerful mission, extraordinary community and remarkable ten-year legacy,” said Ray Anne Evans, Executive Director of Firefly Fund. “I look forward to working alongside Pam, Chris, the Board, our families, donors and partners to strengthen the organization, expand its reach and thoughtfully grow Firefly’s impact in the years ahead. There is tremendous opportunity before us, and I am excited to help build on the strong foundation that has already been created.”

Evans will oversee Firefly Fund’s day-to-day operations and administration, strengthen organizational infrastructure, deepen relationships with donors and partners, cultivate new opportunities and work alongside the Board of Directors to help define Firefly’s strategy for its next decade.

After serving as Firefly Fund’s primary leader for the past ten years, Andrews will transition into an advisory role while remaining actively engaged in the areas that have been central to her work, including family support, advocacy, research, newborn screening and the development of strategic partnerships.

“Part of loving something you have built is recognizing when it is ready to grow beyond what you alone could have imagined for it,” Andrews said. “We want Firefly to become everything it can be, to pursue new opportunities, forge many many more meaningful partnerships, expand its reach and remain a powerful force for patients and families for decades to come. Ray Anne is exactly the kind of leader we want helping us build that future.”

The Firefly community will host an opportunity to welcome Evans at Firefly Fund’s Autumn Glow, Saturday, October 24, 2026, at 4:00 p.m. at Bell Springs Winery & Brewery in Dripping Springs, Texas. The event will feature live music by the Eddie Ray Band and celebrate both Firefly’s accomplishments and the organization’s next chapter.

About Firefly Fund

Firefly Fund is a 501(c)3 nonprofit organization founded to fund the research and education necessary to accelerate a cure for rare neurodegenerative genetic diseases that affect children and currently have no cure—starting with Niemann-Pick Disease Type C (NPC). Headquartered in Austin, Texas, Firefly Fund leads a collection of programs including Newborn Screening, Translational Medical Research, and a Patient Access Fund. These programs offer resources, support, and reassurance to NPC families. For more information, visit www.fireflyfund.org.