28Jun
Tonight on Dateline, The Hempel family who have twin 5 year girls will be airing a story about their family and their battle with Niemann-Pick Type C. The Hempel Family has really worked hard as like other families to promote awareness and to find a suitable treatment for this devastating disease.
As you know depending upon air time and what news happens through out the day, air times could vary. This will be a great informational session and you can see first hand a family experiencing this disease.
Hempel Twins
Thank you very much!
Learn more about Niemann-Pick Type C & Brisan and Parker
02Jan
Doctors performed the world’s first Intracranial Stem Cell Transplant on Aaditya, who suffers from Niemann-Pick Disease Type C
Aaditya is a special young man! His article about the ground breaking procedure he endured was recently released.
Here is the link: http://www.bangaloremirror.com/index.aspx?Page=article§name=News%20-%20City§id=10&contentid=200901022009010201145514184f47eb6
31Dec
KC Metro Family Tries to Cope With 'Childhood Alzheimers'
—Click on the picture to go to the full story……
Video: (I will have to update this link. They have redirected the video)
If you tell someone that your child suffers from “Niemann Pick Disease Type C,” most people would have no idea what you’re talking about.
But if you tell them that your child suffers from “Childhood Alzheimers,” those people would begin to understand the seriousness of your child’s condition.
Niemann Pick disease is a rare and fatal disease that robs a child of both their past and their future, and for one metro family the condition is a double tragedy.
31Dec
These girls have DEMENTIA, will there brains reveal clues that can save millions of Alzheimer patients?
This is a great article. Click on the picture to read the PDF.
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