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Centronuclear and myotubular myopathy are rare inherited neuromuscular diseases. Classified as congential myopathies, the conditions affect all ages, manifesting as a defect in the cell structure of voluntary muscles and causing 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.

Below are some ways you can help raise awareness and funds for research:

Raise Awareness

Raise Money for Research

Join the Revolution

Sponsor the Information Point

The Information Point is run on an entirely voluntary basis. If you would be interested in being sponsoring its work, please email via the website.

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