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At the moment, she's organising a party for 350 people with varying stages of MS - no small feat - involving a fleet of accessible portaloos, two accessible minibuses, two nurses, a host of different types of drinking straws, a comedian and LBC presenter, and a man who can only get to the venue horizontal on a banana board. And what's more, she's managed to blag the venue, the cake, the bar and the food for free. "Where I can, I pull favours!" laughs the woman who manages her 10,000-member site single-handedly from the bedroom of a Peterborough flat.

Celebrating its 10th anniversary this year, Jooly's Joint has been a thriving online community since the days before the term even existed, and the party will be the first time that many JJ members will have met each other in real life, after a decade of communicating through the web. Many are travelling from the US, Canada, Sweden, Switzerland, France and Australia for the privilege and, if previous 'meets' are anything to go by, are likely to come adorned in T-shirts, caps and other paraphernalia decorated with the logo of the site which has changed their lives.

Among those who will be attending are a vicar and his wife - one of more than a dozen couples who have fallen in love and got married through Jooly's Joint. "A lot of people have got married through the site," says Julie. "I don't actively encourage it - I make it clear that JJ isn't a lonely hearts site - but you can't stop people from getting on!"

Julie herself started getting symptoms of MS at 19, but wasn't diagnosed until a year or two later. One of her main motivations for setting up Jooly's Joint (JJ) was to find a way for people with MS to help each other navigate the maze of conflicting information they found they were being given by doctors. "I thought: 'My goodness, I'm quite a confident person - but what is this like for other people? When the web was invented in '92, I borrowed a computer, got online, and found that I got half a megabyte of web space free. I started thinking: 'What can I do with this? What if I could set up a network through which people with MS could talk to each other?' I got a magazine with a tutorial about making your own website, and set it up that night. Within half an hour one person had joined, and now its got in excess of 10,000 members from every English-speaking country in the world where MS is prevalent."

It was also a way of building bridges - for herself as well as for other people. "When people get MS, often the last thing they want to do is see other people with MS. The internet allows them to talk to other people with MS without having to go to a group. There are also practical reasons why people with MS often can't meet up, usually because the idea of travelling is too scary. But it's amazing that within two weeks you find they usually do want to meet up with each other."

At the time that JJ first appeared online, most disability charities only had one paltry web page, and Julie spent 35 hours a week running the site with the clunky technology available, on top of her full-time job at the Royal National Institute for the Blind. Now, much of Jooly's Joint is automated, and it takes Julie a couple of hours a day and ten on weekends to do it. But she still insists that it never feels like a job.

That's one of the reasons why Julie has not gone down the route of sponsorship or charity status for the site. "Obviously it's a question which comes up from time to time, but when I've consulted members about it they've all said no. People come to the site because they want an alternative to an official MS charity. It appeals to them that someone with MS does this for nothing in their spare time, and they don't want it to become part of the MS Society or something. In the future, if I was to become too ill, I might rethink that - but at the moment it ain't broke, so why fix it?"

These days, with an infinite number of online communities floating in the ether, JJ may not seem quite so innovative. But it has had its fair share of recognition; it won Best Online Community at the and the Mirror's readers' choice at the Yell UK Web Awards in 2000. Both ceremonies were on the same night, and Julie hired a chauffeur to whizz her from collecting one accolade from Mo Mowlam to picking up the other from Jonathan Ross.

Julie's work as RNIB's digital policy development manager also won her an award for , for her endeavours to raise awareness of web accessibility among businesses. As a result, she is now helping draft new best practice guidelines for the Disability Rights Commission, aimed at the business sector. She also helped draft the guidelines for government websites, is working with the Ö÷²¥´óÐã on its access standards, and is helping Tesco launch a more accessible website.

With all that going on, it's probably for the best that, for now, the main loves of Julie's life are her two cats, Lola and Betty. But she manages to fit in an active social life as well. "I go down to London all the time for gigs and the theatre - all the usual 30s female stuff. My friends are more important than JJ and my work - they keep me going. Friends are our families these days. If I spent too much time on JJ, it wouldn't be good for my mental health."

Luckily, Julie's MS has not affected her ability to walk, but she has had severe visual problems as a result of the condition, and difficulty with fatigue and short term memory which mean she has to work flexible hours. They are, however, the price she claims to be happy to pay in order to have been involved with JJ. "While it's controversial to say, I don't regret having MS. I feel really lucky to have had the chance to do something which has made a difference to people's lives. JJ has been incredible in helping me develop as a person, in developing my understanding of life. It is my consolation for having MS. Some people say to me that this is why you have MS, so you can do JJ, and I think that's certainly one way of looking at it."

• The Jooly's Joint 10th Birthday Party took place in Birmingham on Saturday 3 September, 2005.