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 husband and my daughter were diagnosed with one of the three forms of this condition around 1998 and my daughter 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
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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