The fifth annual Dart to The Finish charity walk benefitting Dana”™s Angels Research Trust (Dart), took place on Sept. 24 at Greenwich Point Park in Old Greenwich, and virtually across the country. More than 300 participated and helped raise over $175,000, which will help support crucial research into better treatments, clinical trials and genetic testing for Niemann Pick type C disease (NPC), a very rare childhood disease that is often referred to as Childhood Alzheimer”™s.
“”¦This year has had a lot of progress with potentially moving two life-saving treatments forward with the FDA and the funds raised at this walk will help further research on these and other potential treatments for children impacted by NPC,” said Andrea Marella, co-founder of Dart.
Dana”™s Angels Research Trust was founded in 2002 by Andrea and Phil Marella of Greenwich, Connecticut, after two of their four children, Dana and Andrew, were diagnosed with Niemann-Pick type C disease (NPC). Dana sadly passed away in 2013 at age 19. But Andrew, who turned 23 in June, is doing better due to his enrollment in a clinical trial to slow the progression of the disease.
“”¦Most children with NPC passed away in their early teens. Today, with the help of Dart, we have changed that picture. ”¦The NPC community is currently working with the FDA on approving two of the treatments Dart has helped fund, which have benefitted our son Andrew. In the U.S. alone, there are now 120 children enrolled in clinical trials and 50 more international patients. These advancements and progress have only been possible from the generous support of our wonderful Dart community, here in Greenwich and throughout the world, who have come together to support funding that is truly saving lives,” said Phil Marella, co-founder of Dart.
NPC is so rare that only about 200 children in the U.S. have been diagnosed with the disease. and only a few, including Andrew, live in Connecticut. This devastating genetic disorder robs a child of the ability to live a long, healthy life, often becoming fatal in the teenage years.
