NPC is fatal 100% of the time.  There are zero FDA approved treatments.  It commonly strikes young children. Access to two life changing investigational medicines that help hold this horrible disease back are at risk of being taken away.

Click here to tweet FDA and tell them NPC patients need their life changing and saving medicines

Our children's lives and abilities depend on saving access to these medicines. Even weeks without treatment will cause permanent damage that can never be re-gained.

Help be our children's voice to FDA, don't take our medicine, don't let us die. 

The next few weeks and months will determine whether this generation of children and adults fighting NPC will get to save access to their medicine. Help be their hero. 

Thank you!