Our History

The Information Point for Centronuclear and Myotubular Myopathy was established in March 2001 by me - my name is Toni. My father and I were diagnosed with autosomal dominant centronuclear myopathy (CNM) following muscle biopsy in 1998. Also around this time I took a night school class to learn how to design websites. My end of course project required me to produce some web pages, I did mine about the condition and that it is how the Information Point began.

To begin with the website was very basic and very pink and I didn't really know what I was doing. I think it was a way of dealing with my diagnosis and trying to take some control of the situation dad and I had suddenly found ourselves in. Truth be told I still don't know what I'm doing, I kind of just get on and do it but it seems to work out okay.

The aim of the Information Point today is to help others in their search for information, as dad and I were in 1998; bring those with the condition together, whatever their age, whatever form of the condition they have and wherever they may be in the world; and to create awareness of this rare condition. What you will find here is a combination of reference material, stories and links to other sites. I aim to be inclusive of all three forms of the condition but I do not claim to be an expert. The information contained here has been obtained from a variety of sources and collated here for ease of reference. My hope, to create a one stop shop where people can visit to find all the information they will need at their fingertips in the early days of diagnosis and beyond and also to provide help to those whose work may bring them into contact with affected individuals.

Now a very orange website, this colour was chosen for its bright, vibrant and sunny characteristics and to represent what I hope, with ongoing developments in research, is now slowly becoming a brighter future for anyone diagnosed with centronuclear or myotubular myopathy. The sunflowers which appear on the website were also chosen for the positive outlook which I think they convey. I love the way they grow to such dizzy heights, as if they are on a mission to touch the sky and nothing can hold them back. The sunflowers were the inspiration for the now annual Big Sunflower Project which raises awareness of centronuclear and myotubular myopathy.