Pepsi Refresh Links For Vote4Hope, Vote 4 Hope Rare Disease Campaign
September 2, 2010 by Chris Hempel
Filed under Featured Stories
If you are looking for information on the Pepsi Refresh Vote4Hope Rare Disease campaign being run by the Children’s Rare Disease Network and Global Genes Project, here are the links and information you need to help fund hope for sick kids. Click here for Pepsi Refresh Site Link – actual URL if you need it […]
Why Vote4Hope? How Kickstarting Cures For Rare Disease Through The Pepsi Refresh Project Can Help Kids
August 30, 2010 by Chris Hempel
Filed under Featured Stories
Last week, I thought about trying to raise $250k in the Pepsi Refresh Project for The Addi and Cassi Fund and for Niemann Pick Type C disease research but being part of something larger that can make a difference for millions of ‘rare kids’ is important to me. That’s why I decided during the entire […]
RareArtist.org – Rare Art Created by Rare People to Support Rare Disease Awareness
August 20, 2010 by Chris Hempel
Filed under Rare Disease
What a great idea — a new website to showcase Rare Art created by Rare People to support Rare Disease awareness. The Kakkis Everylife Foundation has launched RareArtist.org for artists of all ages affected by a rare disease. There are almost 7,000 rare diseases that affect more than 25 million Americans — many of them […]
Creating Hope Act 2010 Bill Would Extend Priority Review Voucher System To Rare Pediatric Diseases
August 9, 2010 by Chris Hempel
Filed under Featured Stories
Great news for the pediatric rare disease community came out late last week — rare disease advocates please get this out on your blogs! Senators Sam Brownback (R-KS), Sherrod Brown (D-OH), and Al Franken (D-MN) are supporting the bipartisan bill S. 3697, the “Creating Hope Act of 2010.” Nancy Goodman, Executive Director of Kids v […]
IND Application Filed With FDA To Bring Cyclodextrin Into The Brain To Treat Fatal Childhood Cholesterol Disease
July 17, 2010 by Chris Hempel
Filed under Cyclodextrin
After months and months of work and input by doctors and researchers, Dr. Caroline Hastings at Children’s Hospital Research Center Oakland filed our second Investigational New Drug application (IND) with the FDA on July 14, 2010. The 200+ page IND filing details our request to deliver hydroxy-propel-beta-cyclodextrin (HPBCD or CYCLO) directly into Addi and Cassi’s […]
