Joshua Frase Foundation - Press information about myotubular myopathy
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 like a dream from the outset, but with fortitude, perseverance and resolve, we embarked on a journey to understand the pathology of this disorder by building a trans-Atlantic team of world-renowned researchers. Our endeavor to unlock the mysteries of MTM has culminated in our ability to give guarded hope to families across the world that their child might have hope for a brighter future. Joshua Miles’ legacy will be one of life, hope and love as we come to the final chapter. Our goal is in sight. To learn more about the Joshua Frase Foundation you can view the Press Kit here.