Thank you…

Those of you who came to MS Life in Manchester won’t be surprised to hear that it was the biggest ever event for people affected by MS in the UK.

More than 2,700 people attended over two days, with several major research lectures packed out – in some cases, more than 1,000 people were in the main theatre listening to our expert speakers.

We had some great responses from people affected by MS. The fact that there were so many people there with different types of MS, right across the age range, and from all walks of life, was fantastic. Comments included that people felt less isolated, felt part of a community with a strong character and voice, and felt empowered to do more with their lives.

Our fringe events were a great addition to the core event. The comedy night with Rain Pryor, Richard Pryor’s daughter, was a real success, and the fashion show at Harvey Nichols finished the weekend perfectly. The general manager of Harvey Nichols said it was the best fashion show they had been involved with – 40 minutes of cheering, noise and passion, with more than 25 models with MS matching and even outshining the professionals on the catwalk.

This was a new kind of event for the MS Society. We worked hard and invested a lot of time and effort to put on something that the very largest charities in the UK would have been proud of. The response from people affected by MS showed there is a strong desire for us to do more to reach out to all of the MS community and raise the profile of MS. We’re going to take serious notice of that message.

MS Life was a brilliant step in that direction.

5,4,3,2,1…..

Five days to go and more than 2,000 of you have signed up for MS Life. Don’t worry if you haven’t managed it yet, or if our phone lines have been busy because of the massive demand – you can register on the day.If you need any more convincing that Manchester is the only place to be on 22 and 23 April, our full programme is now online. I hope you are as impressed as I am by the sheer range of what’s on offer. Whether you want to ask leading scientists about the latest MS drugs, find out what your rights are at work, try out reiki massage, or plan a holiday that’s disability friendly, we’ve got something for you.

MS and the MS Society are very much in the news at the moment, with a week of MS programmes on Radio 4’s You and Yours, an episode of Casualty with MS featured as a lead story, pieces in the Guardian, Manchester Evening News and BBC and in many regional newspapers. We also have MS awareness week and Cake Break coming up – follow the link for more details. This is all part of the Society’s work to raise awareness of MS and the people it affects.

You may have seen me on this website wearing one of our excellent tracksuits, which JD Sports have produced exclusively for MS Life. If you think it might suit you better, I’d like to give you a chance to win one yourself: simply guess how many people will have registered for MS Life by midday next Wednesday (we are at 2,035 at the moment). The closest guess will get a tracksuit, entries to comms@mssociety.org.uk

the Big Debate

	Mike wearing the new MS Society tracksuit, on sale at MS Life from the JD Sports stand.

We've got less than three weeks to go and already more than 1,800 people have signed up. If you’re thinking about coming to Manchester don’t leave it too much longer!

The MS Life programme is shaping up really well and we’re now just putting the finishing touches to make it really first class.

One of the highlights of Saturday will be Whose Risk? Whose Life?, our keynote debate in the Great Northern Hall at 4.30pm, chaired by ITV newsreader Nicholas Owen. We're looking at two areas – scientific risk, particularly around drugs and social care risk,around people affected by MS being able to lead the life they want and not the totally “risk free” life that providers of care may want. I will be joining Nicholas on stage with others, including Nancy Law, from the US National MS Society, to tackle a couple of thorny issues. We're very keen for you to get involved, so read on.

On the science front, increasing the arsenal of MS drugs may mean including more aggressive therapies, which can carry an increased risk. Where should the line be drawn between effective treatments and higher risks? And should those decisions be left to the regulators? Experts including Professor Alan Thompson, Dr Alasdair Coles, Dr Barbara Harvey and Dr Paul Bull will be having their say.

As for social care risk, many people with MS are reliant on social care services for their personal day-to-day care, but care providers can be risk-averse because of fear of litigation. This means some people with MS find themselves unable to take risks they might want to, whether in simple day-to-day tasks like going to the shops. In different but equally important circumstances, I know a few sailors, climbers, parachutists and pilots among the MS community who’ve struggled to get insurance. Why should people with MS get penalised twice – once by the disease, and a second time by others, who however well -meaning, may prevent them living their life to its full potential. David Hinchliffe, chair of the House of Commons health select committee 1997-2005, David Brindle, from our media partner Society Guardian, and MS Society volunteers Stuart Nixon and Claire Norman will join me in airing their opinions.

If you want to ask the panel about either of these subjects, email your ideas to comms@mssociety.org.uk and someone will be in touch. I look forward to seeing you there.

FA Cup

The FA have just confirmed that the semi final between Chelsea and Liverpool will take place at Old Trafford on Saturday 22nd April at 5.15.  If you are coming to MS Life and haven't booked your accommodation then it's best to do so as soon as possible!

media relations

With under a month to go now till MS Life opens at 10am on the 22nd April, the media are starting to really get behind the event.  The Manchester Evening News have agreed to be a media partner to the event and our spokespeople Rain Pryor and Danny Wallace are both lined up to do a number of interviews over the next few weeks.

As we get closer to the event, our research programme gets stronger and more topical, on Sunday Prof John Greenwood will talk about the potential of Statins in MS.  Research into statins has shown that they may prove beneficial in a range of conditions, it is still early days but a number of exciting research programmes are underway and we hope to learn alot more about statins in the near future.  MS Life is your chance to find out more about the potential benefits – and risks.

It won’t all be research at MS Life though, within the interactive zone a group of young mums with MS will be there to discuss and answer questions about the reality of parenting when you have MS. 

Behind the scenes, we are all keen to make the event run as smoothly as it possibly can.  This week, our Chairman Tony Kennan along with MS Society staff will be meeting with the people in charge of NCP to discuss the logistics of accommodating so many visitors and to see how we can make the travel to G-Mex as easy as possible for those attending.
 

We want you!

I really want MS Life to be the biggest and best event of its kind ever held in the UK, or indeed Europe.

For that we need you! Some 1500 of you have already registered to come and over half of those have MS. So if you’re thinking about coming do it now and register. The more the merrier. I’m particularly pleased to see that over two hundred younger people with MS have registered and I’m really looking forward to meeting as many of you as possible.

Research briefings are a very important part of MS Life. We’re going to make Tysabri one of the featured topics as we know many of you want to know more about this new drug.

And finally a little trumpet-blowing! I’m delighted to say that The Guardian has agreed to be our media partner for MS Life. That’s not only recognition by a national newspaper that this is a significant event but will give us the chance to attract even more people to Manchester. So if you’re registered I look forward to seeing you. If you haven’t taken the plunge, the water’s warm, it’s going to be a great event!

In the zones…

Another week and another 100 people booked to come to MS Life and we’re still continuing to receive forms in their droves here at the National Centre. It is also turning into a real family affair which we’re thrilled about – 60 kids are already booked into the Artful Splodger crèche! We are confirming more and more speakers and exhibitors everyday and are now in a position to publicise the Employment Zone, which will feature staff from the Dept of Work and Pensions, occupational therapists and specialists in employment law. There will also be a number of inspirational people with MS talking about their own career ups and downs.

Tickets for Material Girls, the Sunday night fashion show are now on sale from the MS Society. Angela, Andrea, Louise and David, four of the models from the show took part in a photo shoot at Harvey Nichols to publicise the event. This will be the first event Harvey Nichols have ever held using disabled models.

We are strongly advising people to book their accommodation early, but neutral football supporters can do their bit to help us by cheering on Middlesbrough in their FA Cup quarter final against Charlton so that the Man Utd v Middlesbrough game which is currently scheduled for the 22^nd April is postponed. [apologies to any Charlton supporters!]

exactly 2 months to go!

Eight weeks to go until MS Life descends on the G Mex in Manchester and the programme for the weekend is really gathering pace now. Over 1,200 people have now registered which is well on the way to our target figure of 2,000. We’d really like as many people as possible to come along to MS Life, to see what the MS community is all about. Delegates are coming from MS Societies across Europe including Bosnia, Belarus and Latvia.

The Richard Pryor Tribute night is starting to take shape now, 5 top British comedians are lined up and the evening will be hosted by Rain Pryor. Rain, Richard Pryor’s daughter, is currently performing at the Pizza Express in Dean Street, London over the next couple of nights and is keen to promote awareness and raise money for MS.

Talking of food, there’s going to be a fully working kitchen at the G Mex with a number of chefs cooking up some great dishes and demonstrating that healthy eating needn’t be time consuming or energy sapping. There will, of course, be sampling opportunities.

We’re really pleased that Danny Wallace, the former Man United player, has agreed to be our MS Week media spokesperson and will be talking about his life and experiences. Football is currently giving us one of our bigger logistical problems, the weekend of the 22nd and 23rd April is when the FA Cup semi finals will be held, one of which may be held at Old Trafford – but the FA won’t let us know until the 23rd of March! If you’re coming its best to book your accommodation as soon as possible just in case.

Mike

Nine weeks to go…

It’s just nine weeks to MS Life, the biggest event ever held in Europe for people affected by MS.  It’s starting to build into a really exciting event; over a thousand delegates from 25 countries have registered so far.  There are thirty sessions taking place over the two days,  many of these will be about research the subject most of you want to hear about.  But there’s much, much more. We’ve really tried to make sure that there’s something for everyone covering topics  from aromatherapy to relationships to employment.

When you come to MS Life we want you to have a great time and that includes some serious fun.  

So how’s about coming to our “Material Girls” MS Fashion show at Harvey Nichols, where thirty models all of whom have MS will take part?  Or our Richard Pryor tribute night at the Comedy Store? Or MS at Play hosted by Julie Howell, this will be a night of fun and relaxation.

Controversy, difficult subjects? We’ll tackle those too. 

Like stem cells, where Professor Neil Scolding will try to help us understand where has stem cell research really reached so far? Could it  lead to breakthroughs for people with MS? And how can you distinguish the hype and the conmen from the facts?

If you’ve already decided to come to Manchester I hope to see you there. If you’re still  thinking about coming  I hope I can tempt you to join the thousand who’ve already committed. It’s really going to be something special.

Mike

Welcome to MS Life!

MS Life will take place in G-Mex in Manchester on the 22nd and 23rd April.  It will be the largest event ever organised by my team here at the MS Society and we would like to use this blog to keep you up to date with all the exciting developments.

Mike O’Donovan
Chief Executive
MS Society