Friday, June 23, 2017

Rare Disease Day 2012 – Spread This Call To Action To Make A Difference!

January 15, 2012 by  
Filed under Featured Stories

World Rare Disease Day 2012 is coming up on February 29th.  Consider these staggering statistics. Each year, 139 BILLION U.S. dollars are invested in medical research — much of it from tax payers Each year, 800,000 papers are published in medical journals by scientists Each year on average, ONLY 21 new drugs are approved by [...]

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Rare Disease Foundations Need To Vote 4 Hope In Pepsi Refresh

September 1, 2010 by  
Filed under Videos

During the Vote4Hope Pepsi Refresh Rare Disease Campaign, I am making video postings on Addi and Cassi’s website to raise awareness for all rare diseases, not just the horrific disease called Niemann Pick Type C that I am fighting against on behalf of my six year old identical twins. Please take a minute to watch [...]

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Why Vote4Hope? How Kickstarting Cures For Rare Disease Through The Pepsi Refresh Project Can Help Kids

August 30, 2010 by  
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 [...]

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