February 27, 2024

Firefly Fund Announces $5 Million Gift to Create Center for Rare Disease at UT Austin Dell Medical School

Austin, Texas – To mark World Rare Disease Day on February 29th, Firefly Fund is unveiling a gift of $5 million as the founding sponsor of the groundbreaking Center for Rare Disease (CRD) at the University of Texas Dell Medical School.

The goals and vision of the Center for Rare Disease are clear:
(1) To bring an end to the interminable diagnostic odyssey rare disease families endure, often witnessing their child’s health deteriorate in the process.

“Every family we’ve spoken to in the rare disease community has experienced that moment of uncertainty, panic and fear where they truly did not know what steps to take next,” remarked Chris Andrews, Co-Founder and member of the Board of Directors of Firefly Fund.

(2) To serve as a nexus of innovation, research, and support for patients and families navigating the complexities of rare diseases. The Center for Rare Disease will leverage resources across the UT System and the esteemed expertise of UT Dell Medical School in molecular biosciences, medicinal chemistry, biological-based therapies, pharmacy, and engineering,  to transform the landscape of rare disease research, diagnosis, and treatment.

The establishment of the Center for Rare Disease will be a significant milestone in the battle against pediatric rare diseases, both locally in Central Texas and worldwide.  There is an urgent call for innovative approaches to research and care. “In the aggregate, rare diseases are not as uncommon as we might think. One in 17 Americans is living with a condition we classify as rare. So what we perceive as isolated illnesses actually pose a challenge to our entire healthcare system,” emphasized Steve C. Ekker, Ph.D., Associate Dean of Innovation at Dell Med.

The Center for Rare Disease at Dell Med will enable agility and scalability of research in the rare disease space.  “Once a disease can be identified at the DNA level, it opens doors to various biologic tools. This means that a study initially focused on one case can rapidly expand to encompass a hundred,” highlighted Dr. Leah Harris, M.D., Chair of Dell Med’s Department of Pediatrics and Director of the Dell Pediatrics Research Institute.  Further, through strategic collaborations with biotech and pharmaceutical companies, the Center for Rare Disease aims to swiftly translate discoveries into impactful therapies.

“Firefly Fund is proud and honored to provide seed funding necessary to launch the Center for Rare Disease for rare disease patients and families in Central Texas and across the globe,” expressed Pam Andrews, Co-Founder and Executive Director of Firefly Fund.

To add your financial support to this important work, please visit Firefly Fund’s giving page here.

To learn more about this gift and the Center for Rare Disease, please visit UT Dell Med link here.