National Institues of Health Announces Cyclodextrin Clincial Trial For Fatal...
Over the past three years, many Niemann Pick Type C families as well as physicians treating NPC patients worldwide have contacted Dr. Caroline Hastings and I regarding Addi and Cassi’s treatments with...
View ArticleFrom The Valley of Death to The Valley of Cures – NIH TRND Program Supports...
Thank you Dr. Francis Collins, Dr. Chris Austin, Dr. John McKew and others at the NIH who are all involved in driving the National Institutes of Health’s Therapeutics for Rare and Neglected Diseases...
View ArticleWhy Washington Should Support ULTRA Act (H.R. 3737)
It’s great to see some representatives in Washington are finally starting to understand the real healthcare issue facing tens of millions of American’s afflicted with rare diseases. You can’t improve...
View ArticleMeet The Children Who Are Resistant To Contracting Ebola, HIV-AIDS
My life grows more surreal by the day. Four years ago, I was told that my eight year old identical twins have a fatal genetic cholesterol disease called Niemann Pick Type C (the “Childhood...
View ArticleWalgreen’s Support Allows Our Twins with Niemann Pick Type C To Receive...
We are sorry for the lack of posts in recent months! Hugh and I have been extremely busy with rare disease initiatives for Solution Therapeutics, our virtual biotech, as well as helping the Global...
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