Wednesday, July 17, 2024

NPC Parents and Family Forum

Brain, Neurological, Alzheimers, Parkinsons, ALS, Niemann Pick Tupe C, Aspirin, Aleve, TylenolA Quest For Treatments For Niemann Pick Type C

This area of The Addi and Cassi website is for parents and family members who are dealing with a diagnosis of Niemann Pick Type C and allows us to share helpful information with each other.  We provided this public forum with the firm belief that sharing information on Niemann Pick Type C is a critical part of finding therapies and ultimately a cure to this fatal disease. 

As parents with Niemann Pick Type C kids, we are living in a clinical trial situation each day.  We are all trying various measures to stop this horrible disease from progressing and we can learn so much from each other if we share data and collect it in a public repository.

Note: Don’t forget you will need to do a simple math calculation in order to post on this forum – this prevents autobot spam!  If you have any problems posting, please email us.

Disclaimer: We take no responsibility for the content herein and have made no effort to confirm or moderate the information being shared.   We are simply one family trying to connect with other families to find solutions and therapies for all our kids!


17 Responses to “NPC Parents and Family Forum”
  1. The next time I read a blog, I hope that it doesnt disappoint me as much as this one. I mean, I know it was my choice to read, but I actually thought youd have something interesting to say. All I hear is a bunch of whining about something that you could fix if you werent too busy looking for attention.

Speak Your Mind

Tell us what you're thinking...
and oh, if you want a pic to show with your comment, go get a gravatar!