Life with CNM/MTM
Resources and links for caring for children with congenital myopathy
Diagnosis
What is Congenital Myopathy ***
General Care
2nd Edition Family Guide for Myotubular Myopathy 2020 (Web)- for those new to the MTM community
2nd Edition Family Guide for Myotubular Myopathy 2020 (Press) - for those new to the MTM community
2nd Edition Family Guide for Myotubular Myopathy (Web) - French
2nd Edition Family Guide for Myotubular Myopathy (Web) - German
2nd Edition Family Guide for Myotubular Myopathy (Web) - Polish
2nd Edition Family Guide for Myotubular Myopathy (Web) - Latin America
2nd Edition Family Guide for Myotubular Myopathy (Web) - Italian
2nd Edition Family Guide for Myotubular Myopathy (Web) - Portuguese Brazil
2nd Edition Family Guide for Myotubular Myopathy (Web) - Dutch
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
The Care of Congenital Myopathy: a Guide for Families ~ Polish (transalated by the Joshua Frase Foundation)
Caring for self webinar
Management of CMD - a family guide*
Living with CMD
Exercising with a muscle disease
Scoliosis Management Webinar
Alarm Failure and Fatique 101
Breathing Care
Proactive Respiratory Care in Congenital Muscle Disease
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
Airway clearance techniques in neuromuscular disorders: A state of the art
Understanding Biphasic Cuirass Ventilation (BCV)
Extubation - Efficacy of Mechanical Insufflation -Exsufflation in Extubating Unweanable
Feeding Issues
Feeding Issues
Feeding Issues: G-Tube Videos
GI Issues in Myopathy -Webinar
Miscellaneous 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