Simon Donald is probably best known for being one of two brothers who founded witty and irreverent magazine du jour of the 1980’s, Viz magazine. Behind the humour, lay a sadder story. Simon’s mother, Kay, was diagnosed with Multiple Sclerosis as a young woman. After his birth, her health deteriorated badly. By the time she was 35, she was wheelchair bound, and she died in her 50’s, in 1994, unable to walk, speak or eat unaided, and never able to play as full a part in the lives of her three sons as she would have wanted.

In this documentary, Simon takes the shadows of the past head on and invites them into the boxing ring. He wanted to know everything there is to know about the disease that killed his Mum, but he wasn’t expecting his journey to take quite such a shocking turn……

Dear Attendees

Thank you for attending the first Barts and The London Research Day for People with Multiple Sclerosis and their Families. The primary aim of this meeting is for the Neuroimmunology Group at Barts and The London, Queen Mary University of London, to update you on the latest research in multiple sclerosis; with a particular focus on the research we are involved in.

The idea for today’s meeting came from a session we held for people with MS in Southend last year. The specific purpose of that session was to ask people with MS to be part of a specific research project we were undertaking. The meeting was a great success; we recruited over 30 people with MS for the study. But both during and even after the meeting, we received several requests to consider making it an annual event and also to give feedback to the participants on the results of the research project, if we could. So it seemed we had found a forum that people with MS and their families could benefit from in ways we hadn’t appreciated before. The meeting also allowed people with MS and their partners to meet and talk to scientists informally in a relaxed environment over drinks.

Another reason for holding today’s meeting is to fulfil our obligations to the funders of our research, who require us to engage with the general public, people with MS and their families and other people with an interest in MS. We also believe you have the right to know what we are spending our research money on, as the purpose of our work is to improve our knowledge and understanding of MS with the goal of improving the lives of people living with this disease.

We did a web-based survey of people with MS to explore what would be the best forum for disseminating information about our research. To our surprise people with MS want it all; a website, a blog, a facebook site, a twitter site, regular emails, newsletters, webinars, question and answer sessions and regular meetings like this. We have already launched a blog and will soon be launching a website. We also plan to post our lectures on the web.

For us as a group of MS researchers, this initiative has allowed us to reflect on our work, assess its potential impact and plan for the future. For example, for some of the research projects you will hear about today, we need your help; this may be as a volunteer for a particular study or simply helping us to spread the word.

Another benefit for the group is that the day brings us together without the usual weekly distractions and hence provides us with an opportunity to celebrate our successes. I am also very proud to lead the Neuroimmunology Group at Barts and The London and would like to take this opportunity to thank them all for their achievements and commitment and perseverance towards our ultimate goal: a world free of MS.

Thank you for being here today!

Gavin Giovannoni,

London, 30th January 2010

P.S. Please make sure we have your contact details for our website launch. MS Research Blog: https://multiple-sclerosis-research.blogspot.com/