Welcome to the first issue of Our World for 2011. This year the Information Point is celebrating its 10th birthday. We are very proud of this milestone and think it gives us a fabulous reason to celebrate and to tell the world about centronuclear and myotubular myopathy.
Our first website went live on 14 April 2001 and those of you who have been with us since the beginning will remember the website was very basic - little more than a page of links to useful information and very pink. At the time, my father and I hadn't long been diagnosed with CNM - we were told the condition was very rare and because of this, doctors couldn't really tell us anything about it. Shortly afterward I was undertaking a college course to learn how to design websites - my end of course project required that I design some web pages to pass the course and that is how the Information Point began. Soon people started to visit the website and I learned there were different forms of the condition, often much severer than the form that dad and I had. Stories of people with all forms of the condition were added to the website and a global community of people, all affected by CNM / MTM started to evolve - my college website grew more important than I ever imagined.
Over the course of the last 10 years, the website has undergone several re-designs, we have opened a webshop, started a Facebook group, have our own Twitter page and now produce newsletters three times a year, with the aim of bringing the global CNM / MTM community together and raising awareness of the condition outside of our community too. And this year as a way of marking our 10th birthday, we are launching two new projects. The first is a Mosaic Appeal, a fundraising project which we hope will raise funds for research and the second, The Big Sunflower Project, which it is hoped will raise awareness of centronuclear and myotubular myopathy. You can read about both in this issue of the newsletter and I hope after doing so, you will be inspired to join in with one or both of the projects.
Continuing our birthday theme, we asked some of our parents who have children also celebrating their 10th birthday this year, to reflect on the challenges and achievements of their first ten years. We also have a number of 'All About Me' interviews, including one with Wendy and Zak Hughes - Zak's story was the first story to appear at the Information Point.
As I always say, the Information Point couldn't do what it does without everyone's stories. I truly believe, that by coming together and sharing these, we are making our voices heard and making things happen. So, to everyone who has contributed to the website or to one of our newsletters over the last ten years, thank you and well done - this is your celebration too.
Happy 10th Birthday everyone!