Tuesday, November 21, 2017

Vote 4 Hope at Pepsi Refresh To Find Cures for Rare Skin Conditions like Epidermolysis Bullosa, Harlequin Ichthyosis, Xeroderma-Pigmentosum

September 2, 2010 by  
Filed under Videos

During the Vote4Hope Pepsi Refresh Rare Disease Campaign, I am making video postings throughout September to raise awareness for all rare diseases, not simply the horrific disease called Niemann Pick Type C that my six year old identical twins suffer from. Today’s videos are some of the most heartwrenching videos I have ever watched. The [...]

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Pepsi Refresh Links For Vote4Hope, Vote 4 Hope Rare Disease Campaign

September 2, 2010 by  
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 [...]

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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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Denim Blue Jeans Ribbon To Symbolize Rare Disease Awareness; New Campaign of Jeans and Genes A Perfect Fit!

February 1, 2010 by  
Filed under Rare Disease

The Rare Disease community now has a powerful and universal new symbol to rally around — a blue jeans denim ribbon created by the Global Genes Project and the Children’s Rare Disease Network.  The worldwide initiative lauched today and is focused on raising awareness for millions of children living with rare and debilitating diseases like Addi and [...]

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President Obama, Please Meet Addi and Cassi To Understand Why Your Jay Leno Joke Is No Laughing Matter

March 21, 2009 by  
Filed under Opinion, Rare Disease

President Obama’s Special Olympics joke on Jay Leno may not seem like a big deal to some Americans but for others the gaffe is disappointing. Our twins, Addi and Cassi, are afflicted with a rare and fatal cholesterol disease called Niemann Pick Type C and they are considered “special needs.” We have all made mistakes with words [...]

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