On Friday, October 1, the Parseghian Fund’s hosted their annual Fall fundraiser and reception. It was so great to be able to see and spend time with everyone…in person!

We were also grateful that attendees were able to hear from Cindy Parseghian, Santiago Schnell, and Samantha Berns.

Samantha is battling NPC disease and was able to share her journey with the attendees. As she mentioned, it is because of the support of many that  NPC patients have access to life-improving therapies and we are now working hard to get these FDA approved and develop the next generation of NPC therapies.

We were also lucky to have the Burgos family from Tampa in attendance. Their daughter, Nicole, is 29 years old and also battling NPC disease.   You can learn about their journey from the attached link.

https://patientworthy.com/2021/09/29/interview-how-one-mother-changes-npc-future/

Below are some photos from the special weekend.