#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
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
By David Cry, Guest Blogger
Courage. 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
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