Cyclodextrin As A Therapeutic “Drug” For HIV AIDS, Niemann Pick Type C and other Viruses
Addi and Cassi’s first round of cyclodextrin infusions have been going smoothly at Renown Regional Medical Center in Reno, Nevada. We’re now into our third day of continuous infusions of hydroxy propel beta cyclodextrin (HPBCD) into the girls’ bloodstreams and they don’t seem to be experiencing any negative side effects. I feel as if it’s […]
KTVU Reports On New Treatment for HIV/AIDS and Deadly Childhood Cholesterol Disease
San Francisco Bay Area Television station KTVU Channel 2 tells the story about how HIV/AIDS and rare childhood cholesterol disease are connected and how a promising new treatment with a sugar compound called cyclodextrin could help both deadly diseases. Our thanks to KTVU for airing this 4 minute segment. (April 1st, 2009)
FDA Approves First Ever Cyclodextrin Infusion Treatment For Twin Girls Suffering From Fatal Cholesterol Disease
March 15, 2009 by Chris Hempel
Filed under Cyclodextrin
After months of research, document preparation, discussions with the FDA and an immense amount of stress, it’s finally official. The FDA has approved our “compassionate use” IND request to give Addi and Cassi infusions of a non toxic sugar compound called 2-Hydroxypropyl-beta-Cyclodextrin or HPBCD. This Wednesday, March 18, 2009, at 7:30am and 8:30am, Addi and Cassi will have […]
Thank You Johnson & Johnson For Helping Sick Kids
February 16, 2009 by Chris Hempel
Filed under Cyclodextrin
I am happy to report to everyone that Johnson & Johnson really does care about children, especially Addi and Cassi and kids suffering from Niemann Pick Type C disease. After I posted my previous blog and contacted Johnson & Johnson’s PR department about our situation with the FDA and obtaining cyclodextrin safety data from their […]
Dear Johnson & Johnson, do kids really matter to you?
February 12, 2009 by Chris Hempel
Filed under Cyclodextrin
After weeks of going back and forth with the U.S. Food and Drug Administration (FDA) on our request to give Addi and Cassi hydroxypropyl-ß-cyclodextrin (HP-ß-CD) or "CYCLO" infusions, we finally have a Type A meeting scheduled on February 26, 2009, from Noon-1pm to discuss the clinical hold the FDA put on our "compassionate use" treatment […]
