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 … Read More
Adam Recke Crowned Homecoming King
Adam was diagnosed with NPC in 2006. Since then his family has been fighting for a cure. Of recent, his classmates at Freedom High in Bethlehem, PA chose as the homecoming king. You can read more at: http://www.foxnews.com/health/2016/09/25/pennsylvania-teen-with-rare-brain-disease-becomes-homecoming-king.html You can learn more about Adam and his family at The Race For Adam
Andrew and Dana Marella
From the age of five, it was apparent that the Marella’s daughter Dana, a happy, caring and energetic child, had visual and learning difficulties. After years of searching for answers to her challenges, Dana was diagnosed in 2002 at the age of eight with Niemann-Pick type C disease. In 2004, at the age of 5, Dana’s brother Andrew, the Marella’s … Read More
A Race for Adam Recke
The Race for Adam Foundation, a volunteer non-profit organization dedicated to funding research projects to find a treatment and cure for Niemann-Pick Type C disease (NP-C) and related neurodegenerative disorders, began in 2005. In July of that year, Sean and Amy Recke’s seven-year old son, Adam, was diagnosed with NP-C, a genetic neurodegenerative disorder for which there is no cure. … Read More