3 posts • joined 16 Jul 2010
Re: Mosaic changed my life
sorry if you visited the above link the site was in maintenance mode, a Drupal update messed up the database, all fixed now.
selfless promotion - visit
An interesting side note, since those early days the web has assisted many researchers scientists and families around the world to understand genetic conditions better, families noticed connection's between a number of unique syndromes. And now a group of 9 different syndromes are known to be related making the RASopathies the largest group of genetic disorders known.
I doubt that the level of collaboration that is happening now would ever of happened without those forst steps through the mosaic browser and a few people who could see how it could be used as a tool to bring groups together.
Mosaic changed my life
In 1994 my daughter was born, she was diagnosed with a very rare genetic condition called Costello syndrome. She was the 23rd person in the world known to have the condition and little was known about her future or outcomes.
I used gopher to try and find information with little success, and then saw mosaic, it was amazing. Suddenly users had a way of finding information in a way that was simpler to use then the previous tools. My thoughts at the time were that my daughter is the 23rd person with this condition then I will set about finding somebody else. Working in IT at a university I had access to an early Novell web-server, so I built a small website, archived references to all the medical publications I could find, an hoped that somebody else would find us. Amazingly someone did and our support group was born.
In 1996 when my daughter was diagnosed with cancer the articles referenced on that early website helped to save her life, New scientist included the story in an article 04 October 1997 called Surfer, heal thyself.
Our support group was one of the first, or maybe the first rare disorder support groups just on the web. Even today it is estimated that the numbers of people with my daughters condition is less then 500 world wide, yet our support group has members from all corners of the globe. Mosaic gave me the reason to learn HTML. learn how to make a website and change not only my life but the health of others.
Our current website is http://costellokids.com
since 2002 all consumer goods sold in the EU have a 2 year warranty by law. Unfortunately for us the people who are paid silly money to enforce consumer law don't give a dam.
Under the sale of goods act it is up to the consumer to prove there is an inherent fault after the first 6 months, and this can often be difficult to do.
However Under EU law the 2 year warranty is mandatory
Directive 1999/44/EC, May 1999 from the European Parliament stipulates that by 1st January 2002 all member states must have altered their legislation to comply with new consumer laws. These new laws will ensure that all new consumer goods, including cars, carry at least a two-year warranty and used consumer goods have a minimum of a one-year warranty.
So stuff Microsoft or any other manufacturer who says its out of warranty when it breaks 1 year and a day after purchase, and point them to the above directive.