FOR IMMEDIATE RELEASE: February 23, 2026
CONTACT: Pam Andrews, pam@fireflyfund.org
Firefly Fund Marks 10 Years, Honors Dr. Kristina Jülich with Inaugural Firefly Luminary Award
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 its Firefly Luminary Award. The inaugural award marks the ten year anniversary since the organization’s founding and honors Kristina Jülich, M.D., a pediatric neurologist and trusted partner to rare disease families throughout central Texas.
The Firefly Luminary Award was established to recognize outstanding individuals in the health care industry and rare disease sector who light the way for others. Through her work with physicians, patients, families and advocacy groups, Dr. Jülich’s leadership has strengthened collaboration between stakeholders, helping to transform care for families navigating rare disease diagnoses and treatment.
“We honor Dr. Jülich for her clarity and compassion as a physician who has made a tremendous impact on the lives of her NPC patients, and the entire NPC community,” said Chris Andrews, co-founder of Firefly Fund. “It is an honor to applaud Dr. Jülich’s contributions and role as a steadfast source of light—listening deeply, building trust, and ensuring that families are respected as true partners in their child’s care.”
Firefly Fund was founded by Pam and Chris Andrews after their daughters Belle and Abby were diagnosed with NPC at the ages of 5 and 2, respectively. Belle received her diagnosis following the significant onset of symptoms and years of searching for answers. Abby, who was tested for the genetic disease following her older sister’s diagnosis, was able to receive treatment before the onset of symptoms.
Today, both daughters are doing well and continue to receive treatment at Dell Children’s Medical Center, attend school with friends, and celebrate childhood milestones. The Firefly Fund was inspired by their diagnosis with a vision and mission of ending the long diagnostic odyssey experienced by rare disease families and accelerating cures for children facing a rare disease diagnosis.
In the span of ten years since Belle and Abby’s diagnoses, the Firefly Fund has advanced its mission with notable achievements, including:
- Creating a network where families can connect and receive guidance
- Increasing awareness of NPC, nationally, and globally
- Funding of critical medical research
- Strengthening collaboration between clinicians, researchers, and advocates
- Advancing newborn screening efforts and whole genomic sequencing efforts globally for Lysosomal Storage Diseases and NPC, specifically
- Working with industry stakeholders to advance three FDA-approved therapies for NPC
Building on its work to advance knowledge and access to therapies for children diagnosed with NPC, the organization is led by rare disease caregivers and patient advocates with lived experience navigating rare disease diagnosis and treatment. Convening coalitions of patient advocacy and industry stakeholders, the Firefly Fund is committed to advancing and accelerating access to life-saving and life-changing therapies.
Photo credit: Robby Robinson
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.