A Rare Lysosomal Storage Disease

Archive for 2010


Karen Quandt is the Board Chair for the  A few years back she was completing a study about neurodegenerative disease in family members of patients with Niemann-Pick Type C (NPC). There differently is a relationship between NPC and other diseases. At this given time ,the current […]

Read more

Video: What is Niemann-Pick Type C disease? Can you share?

We have put together a short video of Brisan and Parker Stults to help raise awareness through social media outlets. The upcoming 2011 year should bring hopefully other insightful videos that can be shared with our friends, family, coworkers, and complete strangers. The whole object with any […]

Read more

Desmopressin (DDVAP) Infusions for Platelet Dysfunction Disorder

Brisan and Parker Stults are our two eldest sons’. In combination with Niemann-Pick Type C disease they also have an underlying Platelet Dysfunction Disorder that when they bleed they have a severe delayed clotting time. Essentially the clot won’t stick and creates a very time consuming situation […]

Read more

We’re Famous, Almost | Palm Connections and Mashable

Niemann-Pick Children’s Fund was featured on through Palm Connections. This is huge because literally thousands upon thousands aggregate news and read these publications. A few months back I ran across an opportunity on Facebook to submit an application to be apart of Palm Connections. They wanted […]

Read more

October is Niemann-Pick Disease Awareness Month 2010

October is Niemann-Pick Disease awareness month! Just wanted to pass along what many of you might be aware of if your connected in the NPC community. The below is directly from NNPDF’s site. Please participate on 10-10-10 for a $10 donation online to the NNPDF. They are […]

Read more