The Care of Congenital Myopathy A Guide for Families was created by a core writing team of 5 people along with input from 17 medical personnel and 40 contributors from the myopathy community. The lead author was Chamindra Konersman, MD. Additional authors include Stacy Cossette, MS, Sarah Foye, BS, Anne Rutkowski, MD, Kim Amburgey, MS, CGC, Lucinda Ladwig, Juliana Gurgel Giannetti, MD, PhD. Shannon Welty, copy editor and layout designer.
Sarah Foye, BS is advocate for people with muscle disorders with a focus on Titin Related Muscle and Heart Disorders.
Sarah is a Congenital Muscle Disease International Registry (CMDIR) governing board member and Joshua Frase Foundation
advisory board member. The parent of a child with congenital myopathy. She is also an occupational therapist.
The Care of Congenital Myopathy: A Guide for Families is a comprehensive care guide for families and people with congenital myopathy. It incorporates recommendations from the Consensus Statement on Standard of Care for Congenital Myopathies. The family guide is testimony to many of the challenges, joys, concerns, and triumphs that are typical for those living a not-so-typical life.