Publications
Caring for Children with Neuromuscular Disorders
Caring for Children with Neuromuscular Disorders is designed for children and families, local health care providers and members of the community. This booklet explains how neuromuscular disorders (NMD) affect the body and describes day-to-day care in order to help people feel more confident and safe providing care for children with NMD.
Off to College: A Guide for Young Adults with Chronic Illness
Mary Arbuckle, MSW, 2012 graduate of the long-term training program, created this e-book as a resource guide with college selection considerations, academic accommodation rights and services, student housing options, tips for health care management, encouragement of peer support, financial assistance opportunities, and insurance information to assist students with chronic illness transitioning to college life. This quick guide provides information helpful to both students and parents embarking on this new journey.
Transition to Adult Healthcare Booklets
The booklets have been created for adolescents and their families to help them learn more about cystic fibrosis, pulmonary disease, diabetes and neuromuscular disease, and how to take charge of their care. It reflects the teams' philosophy and commitment to helping young adults and their families make a smooth transition from the pediatric to the adult care team. The publications include information on the stages of transition, checklists to help children and their families set and achieve transition goals, and common questions and answers about transition concerns.