Family of Twins with Rare and Fatal Cholesterol Disease To Seek FDA Approval To Deliver Cyclodextrin Into the Brain
January 15, 2010 by Chris Hempel
Filed under Cyclodextrin, Cyclodextrin News
The tagline of the new movie, Extraordinary Measures, about John Crowley’s fight to save his children from the rare and fatal Pompe disease is….Don’t Hope For a Miracle – Make One! We are now working on making our own miracle – a new compassionate use investigational new drug (IND) protocol and application that we plan […]
Join Global Genes Project and Get Your Denim Ribbon To Support World Rare Disease Day 2010
January 3, 2010 by Chris Hempel
Filed under Featured Stories
World Rare Disease Day 2010 will be held on February 28. Please join the Global Genes Project to help raise awareness for Rare Diseases of all types by wearing denim on Feb. 28 or holding an event in your local area to raise money for your favorite Rare Disease charity (my party will be to […]
Woman Born With Half Brain Gives Everyone Hope – Michelle Mack An Inspiration For All Suffering From Brain Disease
October 12, 2009 by Chris Hempel
Filed under Featured Stories
CNN is reporting tonight on Michelle Mack, a woman born with half her brain who is leading a normal life! According to scientists, her brain has re-wired itself! This story took my breath away. If someone can be born with half of a brain and live a normal life, then kids like Addi and Cassi […]
University of Notre Dame Airs Video During Football Game Highlighting Rare Cholesterol Disease
September 8, 2009 by Chris Hempel
Filed under Videos
Thanks to the University of Notre Dame for highlighting the Parseghian Family’s fight against Niemann Pick Type C disease during the Notre Dame versus University of Nevada Reno football game. They have a true commitment to helping fight not only Niemann Pick Type C but rare disease of all types. A number of people […]
What Dying Kids Can Teach Our Government About Health Care Reform
August 4, 2009 by Chris Hempel
Filed under Videos
Addi & Cassi Story II from Addi & Cassi Hempel on Vimeo. Here is a video we put together for Oprah last year about the issues we are facing with health care and drug development system in the United States and what happens when your children are dying from a rare and fatal cholesterol disease […]
