Niemann-Pick Children's Fund

07/24/2019

The legislation allows patients with life-threatening conditions to ask drugmakers for medicines that have cleared some testing but still haven't been approved by the Food and Drug Administration.

07/06/2019

Twins with rare and fatal genetic disease, Addison and Cassidy Hempel, die in Reno from flu complications. Their parents fought the FDA and now big pharma

04/18/2017

I spent a lot of time with my grandmother when I was growing up.  When I was young, before I started school, my grandmother watched me while my parents worked.  I have many fond memories of walking…

04/10/2017

CTD Holdings, Inc. , a clinical stage biotechnology company that develops cyclodextrin-based products for the treatment of disease, today issued an Open Letter to address false and misleading statements, ...

02/27/2017

01/23/2017

Oh Mr. Stinky! It’s been 2 years since you were called home…. to be reunited with the promise of eternity of no more suffering and to be with your partner in crime Brisan! Live like Kin…

01/08/2017

Today, January 8, 2017, we celebrate you Mr. Parker… AKA Mr. Stinky! It would be your 11th Birthday today big guy. How’s the party going up there?!?!?! We love and miss you so very much…

09/27/2016

A teenager battling a brain disease was voted into the homecoming court, and he won.

08/27/2016

August 27, 2014 – Today little Bubbas we will celebrate your 12th birthday in your memory. You’d be starting middle school and that just seems strange to even wrap our minds around the thought of that reality. That reality is also versed with the sadness that you are not physically here to…

02/12/2016

Finding a Cure for Childhood Alzheimer’s – Johnathan’s Story January 27, 2016 Nine year-old Johnathan Spencer was born with liver failure. Over the course of his early childhood, he underwent numerous liver biopsies. At the age of four, he received a diagnosis of Niemann Pick Type C (NPC) disease––a…

02/09/2016

The mother and father watched as their 16-year-old daughter ate her pork chop and green beans across the kitchen table of their Mount Prospect home, grateful each time she swallowed without struggle.