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Life with CNM/MTM

Resources and links for caring for children with congenital myopathy

Diagnosis 

What is Congenital Myopathy ***

General Care

The Care of Congenital Myopathy: a Guide for Families
The Care of Congenital Myopathy: a Guide for Families ~Spanish  

The Care of Congenital Myopathy: a Guide for Families ~ Russian 

Family Guide for Myotubular Myopathyfor 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

Breathing Care

Need to Know, Nice to Know - Family Breathing Guide
Respiratory Management Webinar

Breathing Issues
Breathing Issues - An In Depth Tutorial
A Patient Guide to Cough Assist
Breathing Basics**
Extubation of Patients with Neuromuscular Weakness: A New Management Paradigm
How to care for a child with a tracheostomy

Respironics Non-Invasive Ventilation Mask Reference Guide

Feeding Issues

Feeding Issues
Feeding Issues: G-Tube Videos

GI Issues in Myopathy -Webinar 

Funding Resources 

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! 

Travelers with Disabilities and Medical Conditions

Traveling with your child on a ventilator - written by a MTM mom after flying with her son. Great article, very detailed!

 

Equipment

A website linking you to resources for slightly used medical equipment in your state.

Helpful Gadgets in caring for your child  

 

 *Thanks to the hardworking staff at Cure CMD, Management of CMD - a family guide is also available in French, Spanish and German.

** 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