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 rare disease is to explain a message in the shortest amount of time to help create emotion. We all act upon our emotions and that has done an incredible amount of good in our society.
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 to control. Typically in Niemann-Pick Type C (NPC) patients bleeding isn’t associated with the disease in this regard. It has been brought up as a concern with a handful of other affected families.
For Brisan and Parker the understanding is NPC is not the complete picture of the issue but is something additional that they have. Although patients with NPC suffer a great deal of loss and affects everything most people take for granted, they can still have additional issues on top of NPC.
Niemann-Pick Children’s Fund was featured on Mashable.com 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 to utilize technology and good causes in conjunction with one another to share with the world. I thought as I filled out that application there is no way out of thousands of applications we would be selected. Continue Reading
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 truly doing some great things and we are thankful to be able to have them around.
Take the NPD 10 – 10 – 10 Challenge!
Please Help Raise Awareness for Niemann-Pick Disease Continue Reading
Actelion Pharmaceuticals LTD produced a short video on two families and how Niemann-Pick Type C Disease has impacted their lives. Hollie Carter and Annie Pyne are featured in this video. They both are youngsters living with this disease. At first sight we all instantly start to evaluate what someone with Niemann-Pick Type C looks like or any other debilitating disease. The important feature to note is this disease can strike at any time. Some look completely “OK” and others you can tell something just isn’t right by their actions. Either way this horrible disease claims their life in it’s unrelenting attack on the nervous system.
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