Rare Disease Isn't Rare
Over 30 million Americans are estimated to be living with a rare disease
Rare Disease Isn't Rare
There are over 7000 known ‘rare’ diseases
Rare Disease Isn't Rare
Receiving a rare disease diagnosis can be a multi-year medical odyssey
Firefly Fund: A Look Back and A Look Ahead
In the span of ten years since Belle and Abby’s diagnoses, the Firefly Fund has advanced its mission with notable achievements. Here’s a look at their story, important milestones and…Read More
Firefly Fund: Ending the Diagnostic Odyssey for Rare Disease Patients
Watch our new video capturing the spirit of our mission – inspired by rare disease parents racing to find medicine to save their children – who, in the process, were…Read More
Matthew McConaughey on the importance of the Firefly Fund
Matthew McConaughey shares a note on the Firefly Fund, a nonprofit organization based in Austin, TX. Our mission is to fund and support the research and education necessary to accelerate…Read More
Latest News & Events
Firefly Fund Marks 10 Years, Honors Dr. Kristina Jülich with Inaugural Firefly Luminary Award
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…Read More
OpEd: Proposition 14 Offers Hope Against Dementia for Families
October 10, 2025 | Austin American-Stateman Check out today’s Austin American-Statesman OpEd by Firefly Fund co-founders Pam and Chris Andrews. Proposition 14 is a vote for compassion, innovation and Texas…Read More