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Toni and dad with sideburns but no beard.Cause

Centronuclear Myopathy (also known as Myotubular Myopathy) is a family of rare inherited neuromuscular diseases. Classified as a congential myopathy, the condition affects all ages. It manifests itself as a defect in the cell structure of voluntary muscles and causes low muscle tone.

My father and I were diagnosed with the dominant form of this condition around 1998 and I subsequently set up The Information Point for Centronuclear and Myotubular Myopathy, to provide information and support and to raise awareness of the condition.

Please visit The Information Point to learn more about the condition.


Ways to Help

  • Shop at the Information Point webshop.
  • Add the Information Point website and webshop to your emails or link to them from your website, blog or on social networks.
  • Raise awareness of the condition by becoming a member of the Cause on Facebook.
  • Buy greeting cards at The Greeting Card company.
  • Organise a fundraising event to raise much needed funds for research.
  • Make a donation to help research.

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