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“The best thing I have ever done”

13th June 2013 by laura.percival

Clare Wallace holding her bicycle above her head

18 months ago Clare Wallace lost feeling in one leg and got the first inkling that she might have MS. A couple of weeks ago she cycled over 300 miles, raising over £5,000 to support the work of the MS Trust. Here she explains how and why the journey began.

 

It’s Saturday 1st June 2013 and I am standing in the Grand Place, Brussels. I’m exhausted and my legs are shaking. Nothing unusual there, as I’m currently awaiting my diagnosis for MS and have got used to these feelings over the past 18 months. But this time it’s caused by something very different. I am standing holding my bike above my head, having my photograph taken by my new group of friends. I’ve just finished cycling 335 miles from London to Brussels via Amsterdam and I am full of pride, knowing that I’ve managed to raise over £5,000 for the MS Trust.

So how did I get here? How did I compete a challenge that in my pre-MS days I probably would never have considered, as I would never have thought I was capable of it?

Something inside me had changed

On 14th January 2012 I woke up at home. I had not changed any part of my life, but something inside me had changed. I couldn’t feel my toes but didn’t think too much of it until the next morning when I couldn’t feel all up my right leg. Everything still moved but I had numbness and couldn’t do anything to wake my leg and feet back up again. With the help of an excellent GP I was referred to the local neurologist and two days later was in hospital having scans and tests.

At first no one mentioned MS, it was all about brain tumours and unpronounceable diseases and conditions. They slowly ticked various ailments I had never heard of from the list and with each appointment I was left wondering what was wrong with me as I knew it was not normal. Four months in, and still without any feeling in my toes, I went for a routine check up with my neurologist.

A million and one questions

I’m sitting in the neurologist’s office and she drops the bomb, “I think you have MS”. I couldn’t quite believe what I was hearing. MS? Isn’t that what old people get? Am I going to end up in a wheelchair? Will I be able to do my job? A million and one questions and instead I was sent off wondering what was going on and where do I go next, without any help or support. This is when I found the MS Trust.

My dad contacted them asking what to do. The information from them was brilliant and thanks to them I am now in touch with the MS specialist team at University Hospital Southampton Neurology Department. The Trust continued to send us useful information and in one mailing they snuck in a little poster, a glorious scene of a man on a bike in the sunshine riding past a windmill, asking if anyone wanted to do the 3 Cities Cycle Ride to raise funds for the MS Trust. “Why not?” I thought, “Looks like fun,” and I got straight online and entered. Then I woke up at 3am wondering what I had let myself in for!

The challenge

I spent a miserable, cold winter training out on my new bike, counting down the days and trying to raise sponsorship. I sat on my bike at local supermarkets for hours on end with collection boxes, amazed at the generosity of people I didn’t know. The months flew past and before I knew it I was sitting on my bike in London for the start of day one.

The first day I climbed hill after hill and traveled over 91 miles from London to Harwich, arriving at the port and sailing overnight to the Hook of Holland. The next three glorious but tiring days were spent pedaling along the cycle paths. First from the Hook of Holland to Amsterdam, covering 60 miles along the coast and through the sand dunes. Then on into Belgium with the longest ride of all, some 117 miles. I have never been so pleased as I was to see the final orange flags highlighting the way and taking me to the hotel in Turnhout for the night! Then the final day, 71 miles to Brussels, with people cheering and clapping as we arrived. We pedaled past canals and windmills alongside the locals, and enjoyed plenty of waffles along the way.

This challenge is the best thing I have ever done. A year ago I would never have thought I would have been capable of completing such a ride and I loved every second of it. I have met some wonderful people along the way, who I hope to call friends for the rest of my life. Many people have told me I have inspired them and they wish they could do something like this. My answer? Go and do it: you will be amazed at what you can achieve. And the best thing about it? Giving something back to those who helped me so much when I needed it the most.

Sponsor Clare via her online fundraising page

Find out about the next 3 Cities Cycle Ride

Clare Wallace and friends on the 3 Cities Cycle Ride

Man vs Miles 11: completing 11 marathons in 11 days for the MS Trust

10th June 2013 by laura.percival

Andy Humphries

Guest blog by Andrew Humphries

I sit here a month and a half away from the biggest challenge of my life – running 11 marathons in 11 days – and I am starting to ponder what I’m attempting to do!

Training is going well and sponsorship is going well, so why the sudden bout of apprehension? Well, the prospect of 11 lots of 26.2 miles is starting to look daunting. But in truth it’s the prospect of failing that’s the worry! I’m not a pessimist, in fact I’m the opposite. But failing? It has never been an option for me.

How did I get here? Since seeing Eddie Izzard run back-to-back marathons I have been keen to see how far I can push my body. Originally I wanted to find three others to run from the top of the UK to the bottom, but apparently no one else is crazy enough. So it fell to me to figure it out on my own. Why 11 you may also be wondering? No real significance, but I needed a start point and a finish, so I worked out how far it was from my grandparents in Cornwall to my home in Daventry. Plus the prospect of running through Cornwall, my favourite place in the world, was supremely appealing.

Thankfully it’s not just me on the running trail (though it is only me running all 11). Joining me will be the fantastic sports therapist Martyn Standish and my best friend and fellow running enthusiast Daniel Hughes.

Daniel is where the MS link comes in. He’s been my best friend for the past 10 years and it’s been heartbreaking at times seeing him dealing with MS since his diagnosis a few years back. As many know, it’s not only the illness, but often issues around it that are the problem. This is why the MS Trust is so close to the heart.

Daniel is going to try to run at least one of the marathons with me, which is amazing.

I started this blog post admitting some worries that I have, but I finish it with a contradictory statement. 11 marathons in 11 days offers many concerns but the thought of completing it, with two of my best friends enjoying the ride and offering me a helping hand, is one of the most exciting challenges I have ever set myself.

Please spread the word! Our Facebook page is https://www.facebook.com/manvsmiles11 and our Just Giving Page is http://www.justgiving.com/andyhumphries.

Thanks, Andy Humphries.

Great cycling at the Goodwood Motor Circuit

6th June 2013 by laura.percival

MS Trust supporter Andrew Parkes shares his experience of taking part in the MS Circuit Challenge at Goodwood.

This was my second year taking part in the MS Trust’s cycle race at Goodwood and I knocked 20 mins off my time – 2hrs 15mins to beat next year then! I support the event for several reasons and it has been great fun to attend with my family and friends. My younger brother suffers with secondary progressive MS so I like to try and do something for an MS charity each year.

I enjoy cycling, mainly mountain biking, and classic cars in my spare time. Having cycled round the Nurburgring, Isle of Man TT course and Northwest 200 course, the Goodwood Motor Circuit seemed perfect to add to the list.

The day is a personal challenge and also fun for the kids. It takes about 1 1/2 hrs to travel down from where I live near Watford. If the weather is good, as it has been for the last few years, then the venue is just a spectacular treat to play in. It is also very accessible enabling all to get around with the minimum of fuss.

Friends that I have taken with me to the event have had a great time. The relaxed, safe atmosphere meant they enjoyed the venue. I think most took it for granted that Spitfires and Mustangs were taking off and landing while we were there – a great spectacle.

The afternoon lap ‘by any means’ is great fun and certainly an enjoyable time with the children, animals, various modes of transport and smiling people taking some exercise. My favoured means has been a skateboard being towed by a trail hound dog! We enjoyed the picnic before and after on the grass and the cakes on sale!

Thank you Kenny Smith and Lord March for making the venue accessible to the MS Trust. I think that with cycling on the up and with a little marketing the event will grow and grow and hopefully raise more and more for the MS Trust.

Find out more about the MS Circuit Challenge and view photos from the day

Cyclists at Goodwood

All is revealed!

2nd June 2013 by stephen.trousse

MS Trust founder and trustee Jill Holt explains how she came up with the idea for the MS Trust Secret Art Show

Back in 2010, my partner Stuart and I put on the first Secret Art Show for the MS Trust in our home town of York.

The idea for the event came from the need to do something a little bit different to raise money for a sponsored event that Stuart and I were taking part in on behalf of the MS Trust. (It was the MS Trust’s Monster Ski. This is an event where you can ski the height of Mount Everest every day. It’s fabulous and I would thoroughly recommend it to any skier.)

Jill HoltThe first show was an actual show in a physical location: it ran for two weeks in a central venue in York. Starting to collect art from scratch was a bit daunting, but I had given myself 18 months to set it all up and, with help and direction from a couple of artist friends, I started contacting as many Yorkshire artists as possible and then slowly expanded further afield. The response was tremendous and eventually we collected around 700 pieces of art. The show was a huge success and we raised an amazing £20,000!

After the show finished a number of the artists contacted me again as they were keen to do something more to support the MS Trust. I chatted this through with Jo, Fundraising and Marketing Director at the MS Trust, and we decided to try the show out as an online event. Since then we have had four online shows and these have raised a further £46,000 for the MS Trust. I never would have thought that, from a small idea, the Secret Art Show would become such an amazing success!

But we can’t raise these large amounts of money or put on the Secret Art Shows without the support of the artists and this blog post gives me the opportunity to thank you all so very much!

I would encourage anyone interested in original art to have a look at the show when it opens for viewing at 9am on 24 June. It promises to be a great show with some very special pieces, all available to buy for £45 plus P&P.

Click here to read more about the Secret Art Show and how it supports the work of the MS Trust.

Volunteering for the MS Trust: get involved and help us support everyone affected by MS!

31st May 2013 by stephen.trousse

Volunteers Week is the annual national celebration of the fantastic contribution millions of volunteers make across the UK – and it’s taking place next week, from the 1-7 June 2013.

Every year over 20 million people across England and the UK volunteer, donating more than 100 million hours to their communities each week.

How can you get involved and help support the work of the MS Trust? One great way you can help is by volunteering at a Cards for Good Causes shop.

c4gcCards for Good Causes manages a national network of around 300 temporary charity Christmas card shops in churches, libraries, community and museums. They sell cards on behalf of more than 300 national and local charities.

Sales from Cards for Good Causes shops contribute on average £48,000 every year to the MS Trust. That’s enough to fund an MS Trust research project, like our current research into Secondary Progressive MS. This results of this project will enable us to design improved healthcare services, train health professionals and develop information resources to help support people with MS as their condition becomes more progressive, through what is a very physically and emotionally challenging period.

But in order for us to participate in these shops and continue to help fund projects like this, we need your help. Most Cards for Good Causes shops are staffed by volunteers from the participating charities. So we urgently need people who can spare one morning or afternoon per week in the eight weeks before Christmas. Duties might include operating a simple electronic till, dealing with payments and keeping the shop tidy.

Volunteering at a Cards for Good Causes shop can be a great way to get work experience, learn new skills and meet new people in a friendly environment – all while supporting the work of the MS Trust.

Last year MS Trust supporter Rachael helped in a shop in Worcester. “Volunteering in Cards for Good Causes helped me to regain some confidence after leaving my full-time job due to the fatigue and cognitive difficulties I’d been experiencing with my MS. I took to the till quickly, which was reassuring, and really enjoyed meeting fellow volunteers and serving customers.”

“Volunteering helps me interact with people and now feel part of the team,” said Sharon who helped at a shop in Bournemouth. “Isolation was an issue when I was first diagnosed. I was not afraid but this enabled me to re-invent myself and gave me hope and courage.”

So if you’re interested in getting involved, let us know. You can call our Fundraising Team on 01462 476707 or email fundraising@mstrust.org.uk. We need additional volunteers in many locations in England, including various locations in both London and Essex. For more about the full range of fundraising opportunities with the MS Trust visit mstrust.org.uk/fundraising

Today is World MS Day: help spread the word!

29th May 2013 by stephen.trousse

It’s not so long ago that we were busy spreading the word about MS Awareness Week in the UK. But today is our chance to lend our voices to the global chorus of World MS Day.

It’s now estimated that MS affects two million people worldwide, although it is likely that many hundreds of thousands more remain undiagnosed. World MS Day was launched in 2009 by the MS International Federation, a network of MS organisations across the world. Since then the event has grown from strength to strength, reaching hundreds of thousands of people in more than 67 countries worldwide and continuing to grow every year.

This year you are encouraged to take part in World MS Day by sharing your motto, the words that inspire you to face up to life’s challenges. You don’t have to be living with MS to take part. By uploading your motto at worldmsday.org you can “join the global movement of people working to raise awareness of MS”.

What’s the MS Trust’s motto? Well, Chris Jones who co-founded the MS Trust with Jill Holt in 1993, once wrote “No matter how small the beginnings, you should never think you can’t make a difference!” Those still seem like pretty good words to live by to us. What about you?

Visit worldmsday.org to learn about how young people across the globe overcome the adversity posed by MS, and to share your own mottos with others. And visit our Spread The Word page for some ideas from us about how you can raise awareness about MS.

A brush with fate: why Brian Palmer is contributing to the MS Trust’s Secret Art Show

14th May 2013 by helena.jidborg

Fate tapped me on the shoulder in a room at the National Gallery in London’s Trafalgar Square.

It was the room where the Titians are, and, even if it sounds like Pseuds Corner in Private Eye, I was analyzing Titian’s late masterpiece “Diana and Actaon”.

Symbolic, perhaps, because in the myth Actaon is an innocent man struck down by Fate.

In my case, the shoulder-tapper was my 32-year-old son. Which came as a surprise, as he lived and worked in Manchester at the time.

“I’ve got something to tell you, Dad,” he said. “Can we go somewhere quieter?”

There was an underground wine bar I knew just across the road. We had a drink, and then my son told me he had been diagnosed with MS.

That was in 1992. Although I was working full time in my own business then, I had also started a two-day-a week course at art school. Six years later, when I was 69, it would lead to an Honours Degree in Fine Art, and I became a working artist. Hence Titian.

As my artistic training began, so also did my association with MS.

It was only natural, then, that when an artist friend in Yorkshire told me about the Secret Art Show that I would want to be a part of it.

At the time that my son was diagnosed, there was no successful treatment and little hope. Now there are both.

Though he now uses a wheelchair, my son holds down good jobs, travels widely, has fun, and is in trials with a new drug at London’s Hospital for Nervous Diseases in Queens Square. I can’t think of a better cause to support than the MS Trust.

Here is some of my work. Can you guess my picture in the Secret Art Show?

Brian Palmer

 

The Secret Art Show has now raised over £66,000 to support the work of the MS Trust, funding vital education and support for MS nurses and therapists, the most up-to-date and reliable information for people affected by MS and practical research that benefits those living with MS now.Our next show launches for viewing on 24 June with all art being displayed on the MS Trust’s website. The sale commences at 9:00 am on 1 July when the art will be available for people to purchase for £45 plus P&P.

MS Awareness Week 2013 comes to a close today . . .

5th May 2013 by stephen.trousse

It’s been a long, busy, exciting week. It all kicked off with our patrons Jackie and Laurence Llewelyn-Bowen appearing on ITV’s Lorraine show to talk about the work of MS nurses on Monday morning. We’ve seen Be Bold In Blue events take place throughout the week, all over the country, raising vital funds for our MS nurse support programme. We’ve announced MS nurses Miranda Olding and Lindsay Harrison as the joint winners of our incredibly successful ‘My Super Nurse’ campaign. And we’ve highlighted the work of MS specialist nurses and how the MS Trust is helping them to demonstrate their importance, impact and value to NHS managers and commissioners.

Thank you to everyone who has join in this MS Awareness week. Whether you’ve held a Bold In Blue event, voted for a Super Nurse or just spread the word, you’ve played a massive part in making this week such a success. We’re hugely grateful.

So MS Awareness Week is over but the work of the MS Trust doesn’t stop here. This week the latest issue of our newsletter Open Door is mailed out, in a new, expanded format, with news about our latest research project into people’s experience of secondary progressive MS. Our work to support MS nurses continues and very soon we hope to announce some exciting news about the future of our GEMSS project.

On Tuesday morning our free phone information service will open as usual, answering all your MS questions and queries. The information team will be busy revising and preparing new resources for everyone affected by MS. Our web team will continue updating and developing our ever-growing, ever-more-useful website. The education team will be hard at work organising our next MS nurse conference. And our fundraisers will be planning all the latest opportunities, from the MS Circuit Challenge at Goodwood to the Trek to Kilimanjaro, for people to raise funds to support our work.

Because MS doesn’t stop, neither does our small team here at the MS Trust. For us, every week is MS Awareness Week. With your help we will continue to strive to make life better for everyone affected by MS.

The new Open Door is on its way

4th May 2013 by stephen.trousse

MS Trust Newsletter Open Door front cover, May 2013The latest issue of our newsletter Open Door has now left the mailing house and should be arriving on your doormats and in your in-boxes any day now. We’re all very excited about the first edition in the new, expanded, magazine style.

With the sun finally coming out, we’ve focused on issues around staying active with MS (including how to manage fatigue). We have a round-up of ideas for summer activities, from archery to paragliding. There’s a report by NHS Shetland physiotherapists Margaret Gear and Ruth Mahood on an innovative way of making exercise accessible for people with MS. There’s an article by Jane Dunham, who rediscovered the pleasures of horseriding after being diagnosed with primary progressive MS. We talk to MS Trust fundraiser Kenny Smith about how he came up with the idea of the MS Circuit Challenge at Goodwood. There’s a Q&A with Mr Motivator. And there’s the usual mix of MS news, research updates and practical tips.

Having spoken to many readers online and through surveys, we’ve tried to retain all the elements you appreciate about Open Door and make the whole publication even more readable, more interesting and more useful. With more pages, more features and more pictures, this issue is hopefully a first step on that path. We’re very keen to hear your thoughts on the new style. We’ll be sending out a reader survey in the coming weeks, but in the meantime if you have any comments please write, email, tweet or leave a message on our Facebook page.

If you don’t yet receive Open Door, there’s still time to sign up to receive the new issue – simply fill in your details on our Sign Up page. If you’ve recently moved (or changed your email account) give us a call on 01462 476100 and we’ll make sure it’s sent to the right address.

Bold in Blue: raising funds to help the MS Trust safeguard the future of MS nurses

3rd May 2013 by stephen.trousse

Although Friday is the end of the working week, MS Awareness Week continues right through to Sunday 5 May – and Bold In Blue events will continue right through the month and beyond. So there is still plenty of time to to get involved and make a difference!

It can be as simple as wearing a blue wristband to show your support. Or you could hold a Bold In Blue event like many of our supporters. If you haven’t planned anything yet don’t worry, you can always help by organising something later in the year – find out how you can Be Bold in Blue.

We’ve received word of hundreds of Bold In Blue events taking place around the country this week. Here at the MS Trust’s offices in Letchworth Garden City we kicked off the week with a Bold In Blue lunch featuring a very special guest appearance from our fundraising mascot, Bob!

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Staff at Biogen Idec’s offices in Maidenhead have been holding Bold in Blue events all week.

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The Information for Families team at East Sussex County Council in Lewes held a BBIB day and raised over £800 by selling cakes, a raffle and dressing blue.

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MS Trust supporter Chris Wilkinson from Attleborough in Norfolk held a static bike ride and has raised almost £1,000.

Chris Wilkinson

The team at Spirax Sarco in Cheltenham held a Bold In Blue baking competition and raised over £140.

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Liberty London Girl is holding a cake sale today at Foxton estate agents in Camden

London Liberty Girl cake sale in Camden

Meanwhile Glyn Brackenbury has embarked on a epic kayaking journey from Lands End to John O’Groats! He’s currently at Anglesey – you can follow his progress at his blog.

Glyn Brackenbury kayaking from Lands End to John O'Groats for the MS Trust

So far this our Bold in Blue fundraisers have raised over £5,000, and, with lots more events planned for this weekend, there is even more to come!

All funds this year go towards the MS Trust’s nurse support programme, in particular our campaign to help roll out the tools we developed on our pilot programme, helping nurses generate evidence for the impact of their services. To read more about our work safeguarding the future of MS nurses, and to find out how you can help read our blog post.