Life with CNM/MTM
Resources and links for caring for children with congenital myopathy
Family Guide for Myotubular Myopathy- for those new to the MTM community
Caring for self webinar
Management of CMD - a family guide*
Living with CMD
Exercising with a muscle disease
Scoliosis Management Webinar
Need to Know, Nice to Know - Family Breathing Guide
Respiratory Management Webinar
Breathing Issues - An In Depth Tutorial
A Patient Guide to Cough Assist
Extubation of Patients with Neuromuscular Weakness: A New Management Paradigm
How to care for a child with a tracheostomy
Public Insurance Programs and Children with Special Health Care Needs- TEFRA/Katie Beckett Option: A pathway to Medicaid for children with disabilities
Variety - The Children's Charity - is a fantastic resource for help in getting your child mobile. We highly encourage you to check out their website.
Social Security Disability Help - an article put together by a community liason for Social Security. Great info!
Traveling with your child on a ventilator - written by a MTM mom after flying with her son. Great article, very detailed!
A website linking you to resources for slightly used medical equipment in your state.
** Originally written for SMA children, can be useful for the respiratory needs of our community.
*** Thanks to the hardworking staff at Cure CMD and summer interns, What is Congenital Myopathy -a video explaining diagnostic process of congenital myopathy