Nothing Bundt Cakes for Nothing Bundt Beautiful Birthday Girls
January 26, 2010 by Chris Hempel
Filed under Featured Stories
Addi and Cassi turned six years old on Saturday. Over two years ago when the twins were diagnosed with Niemann Pick Type C disease, I was not sure they would still be with us today. Our little angels are amazing fighters and doing very well on their cyclodextrin infusions. Here is the ice cream cone […]
Extraordinary Measures Inspirational Quilt – Help Niemann Pick Type C Families Win 10K prize By Voting Today
January 16, 2010 by Chris Hempel
Filed under NPC Family Stories
Five families with children suffering from Niemann Pick Type C disease have posted their touching videos on the Extraordinary Measures Movie’s Inspirational Quilt. They are running a contest on the movie’s website and the winner of the video contest will win $10,000 to be donated the charity/foundation of choice. The chances of winning increases with […]
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 […]
Extraordinary Measures Movie Is A National Healthcare Wake Up Call
January 13, 2010 by Chris Hempel
Filed under Featured Stories
Extraordinary Measures, a new movie centered on the efforts of John and Aileen Crowley to find a researcher who might help find a cure for their two children’s rare genetic disease (Pompe Disease), will hit theaters on January 22. I can’t wait to see this movie! The trailer sounds eerily familiar as we are working around […]
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 […]
