October is Niemann Pick Awareness month and we are asking for your help to spread the word. Recently Actelion Pharmaceuticals LTD interviewed two families that struggle with NPC everyday. Actelioin Pharmaceuticals LTD has been working with the National Niemann Pick Disease Foundation to get FDA approval for Migulstat (Zavesca), the experimental drug Tylor is taking to help slow the progression of NPC.
This video shows how differently NPC effects each child. But most have the same horrible beginning....the time it takes to figure out what is going on with your child. This is where you can help! Spreading the word will make people more aware of NPC which in turn with help in raising money for research. There are great doctors and scientists working to find a cure for NPC but this all costs a tremendous amount of money. The NPC families contribute what they can but we need your help to save our kids lives. Please help by passing this on to family and friends and ask them to do the same.
Summary edit of the Hollie and Annie films from sue lowe on Vimeo.