Centronuclear and Myotubular Myopathy Information Point

It's Good to Talk

The Information Point and Joshua Frase Foundation
Working Together to Bring People Together

The Information Point and the Joshua Frase Foundation are regularly being asked if we can put people in contact with one another and have therefore decided to work together to do whatever we can to achieve this.

Below are some contact methods that you may find useful, alternatively, please contact either myself or Alison Frase, by using the links below.

The Information Point (UK)

The Joshua Frase Foundation (USA)

We will never simply supply contact details to anyone who asks for them, unless we are told specifically that we may do so but are willing to act as intermediaries, at no cost, in order to get people talking.

Chat Rooms

Muscular Dystrophy Association Chat Room

Message Boards

Muscular Dystrophy Campaign Community

Message Board for Myopathies and Rare Types of MD

Myopathy Message Board

Myotubular Myopathy Message Board

These World Wide Web pages are published solely as a service for interested parties. This is a lay interpretation and should not be considered definitive by any means. I do not claim to be either a doctor or an expert nor do I pretend to be. Any decisions on medical treatments, interventions, courses of action, etc. should be made by the appropriate family members in consultation with the available literature and qualified medical professionals. Good sense should always prevail. I assume no responsibility for the use of the information,observations or opinions presented herein.

Links on this site have been included as areas of possible interest. I cannot vouch for the accuracy or suitability of information you may find on them, or on sites linked to them. Information may concern prognoses and must be treated with sensitivity. Be VERY wary of any site that offers treatment or cures and always ask for independent, professional medical advice before you contact a site of this type. If you are not medically qualified and find an item that worries you please discuss it with your doctor.