Walgreen’s Support Allows Our Twins with Niemann Pick Type C To Receive Cyclodextrin Treatments At Home

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 Genes Project with a number of community based rare disease projects. We would like to report that after three years of […]

Ten Tips To Start Your Own Virtual BioTech To Find Treatments For Your Rare Disease

Ever since we went public with Addi and Cassi’s cyclodextrin treatments, I have received countless emails asking me a number of questions.  How did I find the sugar compound "cyclodextrin?"  How did I manage to get the Food and Drug Administration to approve infusions of this new compound into Addi and Cassi?  As a parent […]