The Firefly Fund was started in 2016 by Pam and Chris Andrews, whose six and two years old daughters, Belle and Abby, were recently diagnosed with NPC disease. Since the diagnosis the family formed the Fund, set up a collaboration with Dell Children’s Hospital in Austin, TX, and have in enrolled their children in the Vtesse VTS-270 clinical trial.
On February 28th, National Rare Disease Day, they had their inaugural event in Austin, TX. Guest speakers included Dan Rather, former CBS news anchor, Steve Adler, mayor of Austin, TX, and Cindy Parseghian.
People Magazine recently wrote an article and created a video about the Andrew’s family. You can read about their family in this week’s People Magazine (March 1st) or go to this link to learn more about their inspiring story.