Deb Gordon’s guest was Phil Marella who co-Founded Dana’s Angels Research Trust (DART) with his wife Andrea after their daughter Dana was diagnosed with Neimann-Pick Type C (NPC), which is a very rare cholesterol storage disease that affects children. Most children who suffer from NPC die in their early teens and sadly Dana succumbed to NPC last summer. The Marellas’ son Andrew also has the disease, but is currently stable and being treated at NIH with new medications developed in part with funds raised by DART.
Mr. Marella provided details about Neimann-Pick Type C, and shared information about the signs and symptoms that Dana, Andrew and other children with the disease experience. Mr. Marella also discussed the strides that have been made by DART and other organizations devoted to the cause, including a new collaborative drug development program in support of accelerated research and upcoming trials that are in the works. Mr. Marella discussed the importance of raising awareness about the disease and raising as much money as possible in the hopes of one day finding a cure, and preventing other families from experiencing the effects of NPC.