Wednesday, April 8, 2020

IND Application Filed With FDA To Bring Cyclodextrin Into The Brain To Treat Fatal Childhood Cholesterol Disease

July 17, 2010 by  
Filed under Cyclodextrin

After months and months of work and input by doctors and researchers, Dr. Caroline Hastings at Children’s Hospital Research Center Oakland filed our second Investigational New Drug application (IND) with the FDA on July 14, 2010. The 200+ page IND filing details our request to deliver hydroxy-propel-beta-cyclodextrin (HPBCD or CYCLO) directly into Addi and Cassi’s […]

Kids Living With Dementia Diagnosis – 4 Year Old Johnathan Spenser’s Story

May 19, 2010 by  
Filed under NPC Family Stories

  Johnathan Spencer has Niemann Pick Type C disease like Addi and Cassi. Embracing every moment Thursday, April 29, 2010 By Sara Suddes (ssuddes@gilroydispatch.com):  Photo by: Lora Schraft, Staff Photographer, Gilroy Dispatch   Every morning, Johnathan Spencer’s mother dissolves the contents of a pill containing an experimental drug into a cup of water, draws the solution into a syringe […]

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 […]

FDA Reviewing Investigational New Drug Application For 5 Year Old Twins Stricken With Fatal Cholesterol Disorder

December 28, 2008 by  
Filed under Cyclodextrin

I have always believed there would be a drug sitting on shelf somewhere that could help save the lives of our 5 year old twin daughters, Addi and Cassi. What I never imagined was a sugar compound used in the food processing industry to extract cholesterol and make cholesterol free products like salad dressing could […]

Dr. Phil’s “The Doctors” Show To Bring Childhood Alzheimer’s Into National Spotlight

September 15, 2008 by  
Filed under Addi and Cassi News

  On Monday, September 22nd, 2008, our family will featured on "The Doctor’s," a new Dr. Phil spin-off television show that is in its first season.  Addi and Cassi’s battle against Niemann Pick Type C, also known as the "Childhood Alzheimer’s" disease, will be discussed and we will appear as guests on the show.   Addi […]

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