Videos and Podcasts
Interview with Serina Heinze
Our first interview is with Serina Heinze, age 20, who lost her older brother Tyler and younger sisters Katie and Faith to NPC. We spoke with Serina over the NNPDF
Interview with Christopher Sousa
Meet Christopher Sousa, age 19. Christopher’s brother, Connor, is 17 and was diagnosed with Niemann-Pick type C in late 2011. Can you tell us a little bit about yourself and
NNPDF Meghann Ferguson Podcast
In this Podcast from the 2021 Family Support & Medcial Conference, NNPDF Board Member Meghann Ferguson (and mom of Liam) discusses her experience in sharing her story with the media and how it how it all came together.
RARECAST Episode #298: Readying a Rare Disease Community for the Availability of Treatments
NNPDF Executive Director, Joslyn Crowe joins this podcast episode on Global Genes RARECast where she speaks about how NNPDF is preparing the patient community for the availability of the first therapies for Niemann-Pick disease, the issues people will need to consider, and how families may think differently about their futures.