Firefly Fund

Firefly Dreams brought together an incredible community of supporters celebrating our 10 year anniversary. A Texas-sized shout-out with heartfelt gratitude to our guests including families, who traveled from across the country, our sponsors and team who brought this special evening to life.

New to Firefly Fund? Get involved! Connect with us here and online at fireflyfund.org



Emcee: Lauren Petrowski
Auctioneer: David Ackel
Music: Jonathan Terrell
Auction Platform: HelloFund
A/V Support: Robby Robinson

Event Committee
Stacy Turlington Dollar
Jennifer Johnson
Suzanna Rosenblatt
Kelly Gameson Breeden

Firefly Fund Co-Founders
Pam Crowley Andrews
Chris Andrews

Firefly Fund Staff
Valerie Beesley
Ryan Junell
Emma Andrus

Sponsors
Mandos by Beren Therapeutics
IntraBio Inc
Zevra Therapeutics
Lara Keel
Laura & Kyndel Bennett
Cyclo Therapeutics, Inc.
SEMbio
Stacy & Mike Toomey
Elizabeth Crook & Mark Lewis Foundation
John & Kelly Breeden
Westbank Flower Market
Mark Rowe Henna Chevrolet
The Garden Room
Randy & Stan Schleuter
Kori A. & Brian J. Phenegar
David & Sude Hart
Monamine Oxidase Deficiency Foundation
Texas Children's Hospital
Susie Dudley & Sal Conti
AlphaRose Therapeutics
Allen Boone Humphries Robinson LLP

Our upcoming Firefly Dreams gala is only possible with the support of our generous sponsors. 💫 We’re grateful to presenting sponsor, Mandos® by Beren Therapeutics, a Public Benefit Corporation.

Mandos® is a biotechnology company committed to the development of adrabetadex for individuals living with Niemann-Pick Disease Type C (NPC), a condition characterized by defects in cholesterol trafficking.

Learn more
https://mandoshealth.com

🔬 Families experiencing pediatric neurodegenerative diseases like Niemann Pick Type C face a difficult race against time. This disease progressively steals children's abilities – their movement, speech, and ultimately their lives. The hashtag in H.R.1 protects critical incentives that accelerate the pace of research for these fatal diseases, providing hope needed to fuel families awaiting progress when every moment counts.

🏛️ This legislation dismantles a barrier that disincentivized drug development for ultra-rare pediatric conditions. By protecting crucial incentives for pharmaceutical companies to invest in rare disease research, Congress has empowered researchers to pursue treatments for conditions that affect smaller populations but devastate every family they touch. The hashtag fundamentally reshapes what's possible for the most vulnerable patients.

👇 Pam Crowley Andrews, Executive Director of Firefly Fund, knows the urgency of this fight firsthand. Her powerful message below captures why this law represents more than policy reform – it's a critical accelerator that could mean the difference between breakthrough and heartbreak for families racing against fatal diagnoses.

#orphancuresact #orphancuresact #orphancuresact #raredisease #saveraretreatments #niemannpicktypec | Save Rare Treatments Task Force 🔬 Families experiencing pediatric neurodegenerative diseases like Niemann Pick Type C face a difficult race against time. This disease progressively steals children's abilities – their movement, speech, and ultimately their lives. The in H.R.1 protects critical incentives that a...