From Hospital To Home on Christmas

We started Christmas Eve day in the San Francisco Bay Area at Children’s Hospital Oakland where Dr. Caroline Hastings gave Addi and Cassi their sixth injections of cyclodextrin into their central nervous systems. By 1 pm, Addi and Cassi were feeling a lot better and we raced home on Highway 80 up over Donner Summit, […]

FDA Approves Request For New Cyclodextrin Treatment For Niemann Pick Type C

FDA Approval Received! Children’s Hospital Oakland Receives FDA Clearance to Begin World’s First Cyclodextrin Administration Into the Brains of Twins with Rare and Deadly Cholesterol Disease Sugar Molecule Used In Common Food and Household Products Like Febreze® Fabric Refresher Called Hydroxypropyl Beta Cyclodextrin (HPßCD) Will be Delivered into Twins’ Central Nervous System in an Attempt […]

Cyclodextrins – Recipes To Make Edible Nanostructures and CD MOFs To LifeSaving Drug Treatments

Kenneth Chang of the New York Times reports on researchers creating edible nanostructures with gamma cyclodextrin which researchers are calling edible CD MOF (metal-organic frameworks). Of course, another amazing discovery with cyclodextrin that was found by accident! Potential applications with this gamma cyclodextrin (CD MOF) could include storing hydrogen in future fuel cells in cars. […]

Vote 4 Hope at Pepsi Refresh To Find Cures for Rare Skin Conditions like Epidermolysis Bullosa, Harlequin Ichthyosis, Xeroderma-Pigmentosum

During the Vote4Hope Pepsi Refresh Rare Disease Campaign, I am making video postings throughout September to raise awareness for all rare diseases, not simply the horrific disease called Niemann Pick Type C that my six year old identical twins suffer from. Today’s videos are some of the most heartwrenching videos I have ever watched. The […]

Gleevec Cancer Drug Reported To Work In Alzheimer’s disease also working in Niemann Pick Type C mouse

A New York Times story is reporting that Paul Greengard (and his dog Alpha), who won a Nobel Prize for his work on signaling in brain cells, has found that the cancer drug Gleevec, is a new potential drug target for Alzheimer’s disease and blocks gamma secretase activating protein. Rudolph Tanzi and Paul Aisen are […]

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