Our Guide for Schools

The FSH Society’s Guide for Schools is available online for download and print here.

Created by a team of national experts, this booklet provides information about FSHD and the impact the disease can have on students’ experiences during the school day. The goal is to help parents and teachers prepare for some of the challenges faced by students with FSHD, and to facilitate a positive experience for the teacher and the students.

Sample topics:

• Using assistive technology to meet the needs of students
• Using a 504 plan or an Individualized Education Program (IEP) to outline services needed by the student
• The most common problems faced by students at school and strategies to address those problems
• Addressing the social and emotional aspects of living with FSHD
• Participating in physical education and extracurricular activities

The Guide was prepared by the University of Iowa Children’s Hospital team of: Shelley R.H. Mockler, PT, MPT, ATP, Senior Physical Therapist; Society Scientific Advisory Board member Katherine D. Mathews, M.D., Professor of Pediatrics and Neurology; Anne M. Wallace, M.A., CCC/SLP, Clinical Associate Professor; and Michelle Hosp, parent.

The Society thanks the many individuals with FSHD, parents, therapists, teachers, and other school personnel who contributed to the development of this brochure. Their willingness to share their personal and professional experiences, knowledge, and insight made this project possible.  We also thank the S & L Marx Foundation for providing a generous grant for the production of the brochure.