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Archives for: September 9th, 2016

September is Children’s Cardiomyopathy Awareness Month

Written by Jennifer Huron on September 9, 2016
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#KnowYourHeart to Understand Heart Disease in Your Family

By Lisa Yue, Founding Executive Director of Children’s Cardioymyopathy Foundation, a NORD Member Organization

Every week, 25 children in the United States… Read More

Guest Blog: Tour For A Cure

Written by Jennifer Huron on August 3, 2016
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 By Alison Rockett Frase, Guest Blogger

In 1995 our son, Joshua, was born with a very rare muscle disorder called Myotubular Myopathy; an early death was imminent for our first-born. Through the despair and dismay, a vision of faith and hope was birthed through the Joshua Frase Foundation. Our vision seemed… Read More

Guest Blog: A Parent Advocate & Author Discusses Courage

Written by Jennifer Huron on July 16, 2015
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By David Cry, Guest Blogger

David CryCourage. Strength in the face of pain or grief. A tenet I have experienced on many occasions as the lead of The Adrenoleukodystrophy (ALD) Foundation. I have heard it in the words of mothers whose sons have been… Read More

Trivia Can Save Lives: How a Jeopardy Question Raised Awareness of a Rare Disease

Written by Julie Raskin on March 20, 2014
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I woke up this morning in a great mood.  Something wonderful happened last night.  Let’s see, what was it?  Oh yeah, that Jeopardy question.  Ugh.  Then there was the realization that the moment was over, for good.  Done and gone.  So fleeting fame can be. Read More