Cause

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

• Take part in the The Big Sunflower Project.
• Become a member of the Cause on Facebook.
• Send an Information Point Ecard.
• Add the Information Point website and webshop to your emails or link to us on your website, blog or on social networks.

Raise Money for Research

• Support the Information Point Mosaic Appeal by buying a mosaic tile.
• Shop at the Information Point webshop.
• Buy greeting cards at The Greeting Card company.
• Organise a fundraising event.
• Make a donation

Join the Revolution

• Vote for the Information Point in the Co-operative Bank's Join our Revolution scheme.

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.