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.

Source