Overview of the Foundation
The Firefly Fund is a 501(c)(3) Texas nonprofit corporation.
More foundation overview information coming soon.
Our mission is to fund and support the research and education necessary to accelerate a cure for rare neurodegenerative genetic diseases that affect children and currently have no cure.”
- The primary goal of the Firefly Fund is to finance the acceleration of research needed to find a cure for Niemann-Pick Type C1 (NPC1).
- The Foundation will also serve to educate families and share awareness of the symptoms so that diagnoses can be achieved as early as possible. We want to reassure parents to listen to their instincts and trust themselves. We want to encourage them to be persistent and advocate for their child regardless of what others may not yet understand.
- Finally, the Firefly Fund is meant to offer hope for those families affected with the disease by providing information on treatments for slowing the progression of the disease or treating the symptoms as we work toward a cure. We operate under the belief that no family can deal with this disease on their own. Our founders have been helped immensely by their growing community of NPC families. They plan to foster that sense of community for the world of NPC families at large.
Our Board of Directors
We are honored to have the time, dedication, and leadership of the Board of Directors, as follows:
- Marianne Dwight
- Jack Gullahorn
- MariBen Ramsey
- Dr. Amy White
Belle & Abby’s Story
A couple of years ago, parents Pam and Chris Andrews noticed their oldest daughter, Belle, was showing some developmental delays, specifically manifesting in her gross and fine motor skills. Because she was so young, the delays were subtle and it was hard to know what was normal development and what was cause for concern. But Pam and Chris’s instincts continued to tell them something was abnormally wrong with their daughter.