The Joshua Frase Foundation has developed a publication titled “The Care of Congenital Myopathy: A Guide for Families” in response to requests from families. This work began as a translation into easily understood language from the Consensus Statement on Standard of Care for Congenital Myopathies that was published in 2012 in the Journal of Child Neurology. The foundation also provides documents related to diagnosis and standards of care for clinicians on its website.