About
News and press releases about the Joshua Frase Foundation and its efforts behind CNM/MTM
Thu, Jun 21, 2018
Rare Leader: Alison Rockett Frase, President of the Joshua Frase Foundation
The Basics
Name: Alison Rockett Frase
Title: President, co-founder, and patient advocate
Organization: Joshua Frase Foundation for Congenital Myopathy Research
Disease focus: Myotubular myopathy, a X-linked genetic condition that affects skeletal muscles and occurs almost exclusively in boys. People with this condition have muscle weakness and decreased muscle tone. The condition impairs the development of motor skills, such as sitting, standing, and walking. Often people with the condition need assistance breathing and suffer abnormal bone development. About half will die within the first 18 months of life, and most will not live past early childhood.