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Dementia | The Addi and Cassi Fund - Niemann Pick Type C - Part 2

Tuesday, September 28, 2021

FDA Does Not Approve Actelion’s Zavesca in US – Distressing News For Niemann Pick Type C Community

March 9, 2010 by  
Filed under Featured Stories

Actelion, the makers of Zavesca, today put out a brief statement saying that the U.S. Food and Drug Administration did not approve Zavesca and wants more information from the company on treating Niemann Pick Type C, a rare and dementing neurological disease that afflicts our six year old identical twins, Addi and Cassi. Niemann Pick Type C disease is caused […]

Stem Cells For Dummies: The Controvery, Pros and Cons, Facts, Future Research

January 27, 2010 by  
Filed under Featured Stories, Stem Cells

Ok, I admit it. I am a Dummie!  Especially when it comes to Science!  I do hold a Bachelor of Arts in Political Science from Berkeley but it’s not exactly the type of “Science” degree you need when your children are dying from a rare cholesterol disease that causes dementia. All of a sudden topics […]

Nobel Prize Winning Cholesterol Researchers Brown and Goldstein Enter Cyclodextrin Field Of Study

November 10, 2009 by  
Filed under Featured Stories

I wonder how many smart cholesterol researchers have Google Alerts set up on Brown and Goldstein Labs?  If they do they might want to read this post about the Nobel Prize winning labs release of a very important cholesterol paper involving cyclodextrin and its modulation of cellular cholesterol metabolism. With their amazing new research work, […]

Woman Born With Half Brain Gives Everyone Hope – Michelle Mack An Inspiration For All Suffering From Brain Disease

October 12, 2009 by  
Filed under Featured Stories

CNN is reporting tonight on Michelle Mack, a woman born with half her brain who is leading a normal life!  According to scientists, her brain has re-wired itself! This story took my breath away.  If someone can be born with half of a brain and live a normal life, then kids like Addi and Cassi […]

FDA Investigational New Drug Application Documents for Cyclodextrin Treatment for Niemann Pick Type C Disease

September 13, 2009 by  
Filed under FDA Cyclodextrin Filings

Here you will find detailed documents outlining Addi and Cassi’s cyclodextrin infusion treatments. We filed a compassionate use IND application to the US FDA in early 2009 to give intravenous cyclodextrin treatment which was approved.  In September 2010, FDA approved a new request to put HPBCD directly into the brains of the twins.  Addi and […]

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