The Addi and Cassi Fund – Niemann Pick Type C

Drug for Rare Disorder Linked to Reducing Cholesterol Plaque

Daddy — Wed, 06 Apr 2016 22:32:33 +0000

Compound being tested in a genetic condition showed promise in treating heart disease in mice By: Amy Dockser Marcus (Wall Street Journal) Updated April 6, 2016 4:19 p.m. ET Cyclodextrin, a compound now in testing to treat a very rare genetic disease, may have a potential use in treating a much more common condition too: […]

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In Science, Inspiration Can Come From Unlikely Places

Daddy — Wed, 06 Apr 2016 22:15:07 +0000

A mom reached out to a scientist with a novel idea for an experiment. Years later, her hunch has blossomed into a published scientific study. By: Amy Dockser Marcus (Wall Street Journal) Updated April 6, 2016 2:08 p.m. ET In science, ideas can come from anywhere. Still, Eicke Latz was surprised to get an email […]

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CNN – Dr. Sanjay Gupta Chronicles Our Fight

Daddy — Tue, 02 Dec 2014 01:42:09 +0000

A Mother’s Quest – Dateline NBC Story 2009

Daddy — Tue, 02 Dec 2014 01:16:59 +0000

A Mother’s Quest – Dateline NBC Story about FDA Approval for Cyclodextrin Infusions for Addi & Cassi Hempel from Addi & Cassi Hempel on Vimeo. DATELINE Covers FDA Approval of Twins Cyclodextrin Infusions

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NPC Disease and it’s Connection to Ebola

Daddy — Mon, 03 Nov 2014 18:52:11 +0000

Amy Marcus at the Wall Street Journal has written a short story about the unexpected connection between NPC and Ebola today. It is a fascinating article that provides further compelling evidence about 2 concepts. First, the idea that Rare Disease research can inform the research going on in the “big conditions” like Ebola Second, it […]

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