School & Education Resources

Every student with facioscapulohumeral muscular dystrophy is unique. Learn how students, parents, educators, and administrators can collaborate to create a safe, inclusive environment where students with FSHD can participate fully and reach their potential.

FSHD School Guide for Educators

The cover of the FSHD School Guide features a collage of 8 photos of students living with FSHD. Some photos showcase the students participating in school activities or holding up schoolwork. Other photos depict students with their family or teachers. In an circular orange call out in the upper left to mid-left side of the cover, white text reads: FSHD School Guide Supporting Students with Facioscapulohumeral Muscular Dystrophy in Educational Settings A practical resource for educators and school staff All white versions of the FSHD Society and Cure FSHD logos are below the text. In a dark green call out running across the bottom of the page, text reads: UNDERSTAND: Learn about FSHD and its impact SUPPORT: Strategies to support access and wellbeing INCLUDE: Foster inclusive classrooms THRIVE: Help students reach their full potential — FSHD School Guide Cover Page

The FSHD School Guide offers practical information to help schools create a safe, inclusive environment where students with FSHD can participate fully and reach their potential. In addition to student perspectives, the guide includes a list of suggested accommodations and helpful questionnaires to understand the breadth of each student’s needs.

The most effective school plans are individualized, flexible, and built through collaboration among the student, family, healthcare providers, teachers, and support staff. The student’s voice should remain central whenever possible.

Click the button below to access and download the PDF to share with your school administrators and your student’s teachers.

Access the School Guide

In addition to the PDF, you can watch and share this 5 minute overview with your school administrators. The video covers key points from the full guide and serves as a short, informative introduction to FSHD and how to adapt to meet students’ needs. Click the below button to view the video on YouTube.

School Guide Video

College Preparation Advice

Wade C., a long-time college admissions and ADA special, shares his advice for how to prepare students to thrive as they transition to colleges, trade schools, and post-high school education. Wade hopes to make the college application and matriculation process less overwhelming—and more empowering—for both students and parents.

Click the button below to read his advice.

Learn More

FSHD Parents' Roundtable

The Parents’ Roundtable Chapter is led by parents who know all too well the challenges of parenting a child with FSH Muscular Dystrophy. This group was formed by parents, for parents and families, to offer support, compassion, and guidance. Our aim is to connect families, deepen community, and support FSHD families wherever they may be.

Click the button below for more information about meetings and joining our parent community.

Join the community