Our History

The Information Point website was set up in March 2001 by me - my name is Toni and my father and I were diagnosed with Autosomal Dominant Centronculear Myopathy (CNM) also known as Myotubular Myopathy (MTM) following muscle biopsy in 1998. Around the same time I had taken a night school class to learn HTML - for my end of course project I produced some pages about the condition and that it where things started. Having encountered difficulty finding information about the condition on the internet I decided to set up my own website. I wanted to produce something productive and useful, that would ultimately help others in their search for information, bring sufferers together and create awareness of this rare condition. The site is now run from my home, in the UK in between working full time and studying with the Open University.

In 2006 the site was re-designed to coincide with our 5th anniversary and I hope is now a little less home made to look at and easier to navigate - the heart of the website however remains the same; to inform, to support and to raise awareness. What you will find here is a combination of reference material, stories and links to other sites. I aim to be inclusive of all 3 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.

The sunflowers which appear throughout the website were inspired by photographs taken by my father. (Dad your photos are amazing and too beautiful to be hidden away so I have given them an audience here so that they may shine). Sunflowers were 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. My hope for this website is that just like a sunflower it will continue to grow strong year after year, as will everyone who has need of its information.

The Information Point is a member of the National Council for Voluntary Organsiations. In 2007 the website was awarded a Community Champions Fund Grant and was shortlisted for a Be Cause Award.