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Guest blog: ‘How’d I get that?’

Posted on: November 29 2017

In this guest blog Doug Ankerman asks readers ‘How’d I get that?’ Doug, who was diagnosed with multiple sclerosis (MS) in 1997, is the author of the blog www.myoddsock.com...

Let’s play the MSer’s favorite game of cuts, scrapes and bruises. It’s time for….”How’d I Get That?”

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Hmm, a bruise on your arm.

Did you…

  1. Catch your arm on a closet door.
  2. Run into the fence post.
  3. I have MS, I don’t remember.

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Ouch, that scrape on your knuckles seems painful.

Did you…

  1. Reach into the tool box.
  2. Touch the sharp edge under the sink.
  3. I have MS, I’m not sure.

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What did you do to your leg?

Did you…

  1. Scrape it on the steps.
  2. Scratch it on the edge of the deck.
  3. I have MS, what scratch?

My point is, living with multiple sclerosis, we tend to acquire many unexplained nicks, marks, cuts, bumps and bangs. Often we can’t explain how they happened.

Having no feeling from the armpits down, I collect skin abrasions like a donation bucket attracts pocket change.

I find marks on my body and have no idea where they came from. I don’t even feel the blood running down my leg.

Are we superhuman?

Do we have high pain tolerance?

Nah, we just have MS.

Are you one with multiple sclerosis who finds unexplained “ouchies?”

Tell us your side – but please don’t get any blood on the keyboard.

Be safe my MS friends.

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Is your experience similar to Doug’s? Share your comments below!

We're celebrating #givingtuesday!

Posted on: November 28 2017

Hi everyone,

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Today’s the day to do good stuff for charity!

Every year businesses and charities support the #givingtuesday campaign and it’s a day dedicated to doing good stuff for charity. Last year #givingtuesday broke a Guinness World Record for the most online donations in 24 hours, as people gave away $48 million to good causes globally. The UK was the second biggest contributor to this amount.

So, how can you get involved? A simple way to make a difference on #givingtuesday is to make a donation to MS-UK. We’re here to support anyone affected by multiple sclerosis, and your donation helps us ensure nobody faces this condition alone.

Another way to do good stuff is to sign up as a volunteer. We have lots of easy, fun ways to get involved with our work throughout the year, whether it’s supporting a bucket collection or cheering on runners at a national event. Just email me to find out more about volunteering!

Of course we couldn’t let today go by without doing good stuff ourselves, so we’re off to our local Waitrose store to help shoppers pack their bags. Keep an eye on our Twitter feed for photos!

Whatever you do today to celebrate #givingtuesday, I hope you have a wonderful day and enjoy being part of this global movement!

Best wishes,

Jill

Jill Purcell, Fundraising Manager

Last chance to join the Santa Run!

Posted on: November 27 2017

sr-4.pngHo-ho-hello!

Here at MS-UK we are gearing up to attend in our first Santa Run! The event takes place at Victoria Park on 03 December. Our fantastic runners will be joining 4,000 other Santa’s completing a 5k or 10k distance by walking, running or jogging in a Santa suit. The event organisers are also holding a fancy dress competition so it will be interesting to see what other festive friends will be on the course!

Once our team members have collected their medals, they will be joining us for a mini festive picnic as a thank you from us. There will be other festive entertainment to enjoy after the event including carol singers and a Christmas market. Something for all the family to enjoy!

We have just a few places left for this cracker of an event, so email me today or give me a call on 01206 226500 to grab a place! It’s £25 to register, and £100.00 minimum sponsorship commitment. Children over the age of 8 can enter too for a £10 registration fee. You can run, jog, walk, wheel the course, and you can also bring the dog! The course is fully accessible so anyone can join our team!

Yule be sad to miss it!

Jenny

Jenny Poulter, Events Fundraiser

‘I’m f#*king well going to beat it!’

Posted on: November 23 2017

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Mark Lewis

Media lawyer, Mark Lewis, shares his experience of living with MS in the Channel 4 documentary, ‘In search of a miracle cure’. He visits Jerusalem to receive experimental stem cell treatment as part of a trial that could alleviate his symptoms and slow the progression of his multiple sclerosis (MS).

 

The documentary reflects various aspects of living with MS, including the changes it can bring to one’s lifestyle and the emotional turmoil it can cause. Mark’s perception of his MS is that it is something that he can either win or lose, and he is clear that he is going to win.

How do you view your MS? Do you feel that it is a battle that you’re aiming to win day after day, or is this something that is part of you that you don’t need to fight? Perhaps your MS is benign and does not influence your life? There is no single MS experience and each person might find that their emotional responses vary over time.

There are times when your MS might feel overwhelming and you might be frustrated at not being able to control what is happening to your body. MS can also be exacerbated by stress and lead to life-changing decisions such as giving up work. People sometimes struggle to cope with the reactions of their friends and families. Our counselling service can offer you support.

MS-UK Counselling is a specialised service for people with MS. All our counsellors are BACP registered or accredited and have training in working with people with MS. Our sessions are delivered over the telephone so counselling is easily accessible to everyone. Please see www.ms-uk.org/counselling for further information.

Channel 4 to air Britain’s top super lawyer Mark Lewis, taking part in MS stem cell trial

Posted on: November 22 2017

mark-lewis-3.jpgMark Lewis is the famous lawyer who took down one of the world’s most powerful media moguls, Rupert Murdoch. The show, titled ‘The Search for a Miracle Cure’ is set to air on Thursday 23 November at 10pm.

Filmed over the course of a year with exclusive access, film makers follows the progress of high-profile media, libel and privacy lawyer Mark Lewis as he embarks on revolutionary stem cell trials for multiple sclerosis (MS).

At the age of 25 Mark was diagnosed with MS. There is currently no cure and over the last few years Mark’s condition has worsened.

Now 50, Mark first came to the public’s attention as the lawyer who represented Milly Dowler’s family, and more than 180 hacking victims in the News of the World phone hacking trial – a victory that was followed by the demise of the newspaper. However, stress worsens the symptoms of MS and Mark’s high-profile law career and battle with the tabloids has put his MS on fast forward.

mark-lewis-2.jpgThis summer, Mark began a journey into the unknown when he became Patient 31 of 48 in a revolutionary clinical trial, conducted at Hadassah University Medical Center in Jerusalem by Dr Karussis. The trial is working towards finding a way to halt MS in a bid to help Mark and the estimated 2.5 million people with MS worldwide. Its cutting edge science with huge promise and researchers hope findings could positively impact other neurological conditions such as Alzheimer’s and Parkinson’s disease, and for those who have survived stroke.

mark-lewis-1.jpgMark believes this journey to Jerusalem is his last chance as he says, ‘My life is like an egg timer that the sand’s dripping through and the sand’s nearly finished. I want the Doctors to turn it round for me as I know that if someone doesn’t flip it round, that sand is slipping out.’

 

Here at MS-UK we’re hopeful yet cautious when people talk of ‘miracle cures’. We’ve read the positive results published so far for this trial and will be sure to tune in to hear Mark’s experience. We would also love to hear your thoughts, simply email newpathways@ms-uk.org.

Rushmere Golf Club scores a hole in one for MS-UK

Posted on: November 21 2017

img_0514.jpgMy name is Darren, and I’ve recently joined MS-UK as the Community Fundraiser. As a golfer, I was thrilled to hear about my first task – visiting Richard at Rushmere Golf Club!

During Richard Ford’s tenure as club captain of Rushmere Golf Club in the past year, he chose MS-UK as his captain’s charity of the year. On 14 November I went along to be presented with the cheque from Richard at Rushmere Golf Club.

 

Richard’s sister-in-law Julie lives with multiple sclerosis (MS) and uses the facilities of Josephs Court, the MS-UK wellness centre based in Colchester. One of the many pieces of equipment in Josephs Court is an FES bike (functional electrical stimulation bike). Julie has used the FES bike and seen first-hand the benefits of it for people who live with MS.

The FES bike currently used is now approaching 20 years old and needs replacing so the FES Appeal was launched earlier this year to raise the £22,500 needed to purchase a new one!

During Richards’s time as club captain, himself and the other members of Rushmere Golf Club raised £2,295 which is a fantastic! This contribution will go to our FES Appeal, and has now put the appeal total well over a third of the way there.

I want to say a big thank you to Richard, the club and everyone who has raised this money towards our FES Appeal!

Darren

Darren Fuller, Community Fundraiser

Marathon meet up!

Posted on: November 17 2017

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During the event our runners heard from us about the next steps in the lead up to Virgin Money London Marathon and we shared some top fundraising ideas.

We also had some guest speakers! Our first speaker was John Trory who has been supporting MS-UK for 18 years. John spoke about his running experiences, the highs and the lows. This will be his 45th marathon in 2018!

Next up was Jessica Armstrong who as well as running for MS-UK is a sports therapist professionally. Jessica shared some top tips about stretches for warm up and cool down as well as doing some live strengthening exercises.

We then heard from Sheena Watts who ran her first marathon last year. During Sheena’s inspirational talk she said if she can do a marathon anyone can and was full of top tips for surviving a first marathon!

The finale was led by father and son team Chris and John Bradshaw. Chris ran his first marathon for MS-UK in 2017 and in 2018 he will be running along with his dad who will be 61 years old. Chris and John were full of great advice and showed a very entertaining video which they had put together. Chris’s favourite running regime is to run at 5am which energises him for the day and he starts the day raring to go!

The biggest tip that came across during the evening was pick a training plan that works for you, the warm ups and cool downs are as important as the training to prevent injury and preparation is key!

Thanks again to Tijmen Wigchert and CBW for hosting the event for us and providing the refreshments.

Our brilliant Virgin Money London Marathon team help us continue our work supporting people affected by multiple sclerosis, and it was amazing to see so many before the big day arrives in 2018!

Best wishes,

Jill

Jill Purcell, Fundraising Manager

Guest blog: Karen's marathon story...

Posted on: November 17 2017

image2.jpgNext year, Karen Miele will be running the Virgin Money London Marathon. Discover her creative approach to fundraising in this guest blog...

When I got the call confirming that I had been accepted onto the MS-UK Virgin Money London Marathon team my mind was a big mixed bag of emotions. Having run a marathon before I knew how how much hard work it would be - not just the marathon itself, but also the fundraising.

Once the fear and excitement had started to settle, I knew the first step was to put together a fundraising plan. As well as the usual bake sales and raffles, I wanted to do something a little different. Instead of just relying on donations, I began to think about how I could engage people in my fundraising and what I could offer them in return.

I heard about a photographer who offered portraits in return for donations, which got me thinking about how I might take a similar approach. I am an artist and printmaker, so I decided to use my skills to host a series of art and craft workshops.

image3.jpgThe first was a knitting crafternoon, followed by two lino print tote bag workshops. I set up event pages on Facebook and invited people to donate to my JustGiving page in return for a ticket to the event – and of course no good event should go ahead without some cake and snacks, which I baked the day before!

The feedback on the workshops has been fantastic, and many new people are already keen to come along next time. My guests loved spending an afternoon learning a new skill and discovering creativity they never knew they had – all while raising money for such an important cause.

image1.jpgI have also been busy making some running themed accessories and jewellery to sell.  My first item is a laser cut purple shimmer “Runner” necklace. I chose the purple theme as it’s both the colour for MS-UK and my running club, the Notts Women Runners! These have been really popular, and sales have already raised over £100. I will soon be adding keyrings and screen printed tote bags to the range.

My advice for anyone seeking fundraising ideas is to think about what makes you an individual. Ask yourself what skills you have that you can use or share to create unique experiences for your donors. Good luck!

 

Guest blog: Making the most of your work experience

Posted on: November 17 2017

florence-work-experience-nov.jpgHi, My name is Florence, and I have recently embarked upon what will hopefully be just the beginning of my MS-UK volunteering journey. After a few tumultuous months of post-uni panic I decided I was ready to start gaining some valuable vocational experience in the marketing department of a local charity. From various internships and volunteering posts which I have enjoyed in the past I made the decision that the marketing path was the most suitable direction for me to take in the charity sector. The MS-UK marketing department has provided the perfect environment for me to pick up key skills and techniques necessary for success in the charity marketing world. I wanted to share a few top tips which have helped me to ensure that I have gained a wealth of knowledge and experience from my limited time here at MS-UK…

  1. ASK QUESTIONS! - This is without doubt the most important part of utilising your learning opportunity to the best of your ability! Nobody expects you to have all the answers as you’re quivering with feelings of inadequacy at your far-too-fancy desk. Take your colleagues seriously when they give you the ‘if you’ve got any questions just give me a shout’ spiel. Every question I’ve asked at MS-UK has been answered with a smile, and I’d still be stuck on my first task if I hadn’t plucked up the courage to admit I was somewhat clueless about the best way to make a merry poster for our Christmas fundraising appeal
  2. Find your niche - Make sure your team provide you with a wide variety of tasks to complete during your placement. Ensure you have at least one of your own personal projects to work on, however big or small, so that you have work to be proud of and claim as your own when discussing the value of your experience in future. However, don’t allow yourself to be caught up in one minute area of the job. Experiencing an assortment of aspects to the role will enable you to find your niche and understand yourself as an employee. If you work out which tasks you’re good at you can establish an understanding of the type of role you may excel in in the future and tailor your job search to these realisations
  3. Strengths and weaknesses of the company itself - Work out what sort of organisation is best suited to your needs. You may find that you rely upon a strict sense of routine, therefore a ‘flexible working hours’ policy is definitely not for you. Others may thrive in an environment where they can mix up their working pattern on a daily basis. Getting to know which aspects of the organisation you’re working for are tailored to your attributes will really aid your understanding of what it is YOU want from your workplace, as well as what THEY want from you

Find out more about MS-UK and meet our team on our website!  

Fundraiser of the Month: Glenn

Posted on: November 15 2017

glenn.jpgThis November, Glenn shares his fundraising story with us. Glenn is taking on three marathons in aid of MS-UK. Fundraising means a lot to Glenn, who is running for his mum Kelly, who lives with multiple sclerosis (MS). Here is his story...

Hello my name is Glenn Morrison and I am a welding apprentice from Aberdeenshire in Scotland, and I hope to raise £3,000 by running the Inverness, Dublin and London marathons for MS-UK .

My mum Kelly suffers from severe MS and was diagnosed almost 20 years ago. Sadly the decision was made that our mums level of care and risk was too high and she was to move into full time care. This was very hard for our family as mum felt we would never see her again.

That is why this fundraiser means so much. We wanted to show mum that we would still do anything for her.

We started organising fundraisers big and small aiming for people to get something back in return for sponsoring me. I started telling people why we were raising money and the response was unbelievable. People weren’t only donating money but raffle prizes, their time, support and advice on training and fundraising.

Some great advice to anyone fundraising would be, use the strengths of others! You don’t have to do everything yourself.

My sister loves to bake and we held a ‘homemade coffee and donuts day’. It went down better than expected and we raised £130. One of my mums best friends is great with arts and crafts and made a beautiful hamper with matching glitter Prosecco and glasses. We sold lucky squares for £3 each and the winner won the hamper, this raised £350. One of my friends decided they would do their own little fundraisers in their shop. She sold word searches for £1 each with prizes to be won. Her granny made home bakes and they sold them at the shop and put out buckets at the counters for small change. Small fundraisers soon mount up and she has raised over £300.

My work mates soon got in on the action and organised a bingo night at the local fish and chip shop would you believe! Everyone who attended received a fish supper before the bingo started and we held a raffle and bottle stall. The night was a huge success and raised £1,000.

The day after, our local football club let us hold the raffle for their quiz night and we raised another £300.

On Saturday 04 November I’m holding my next fundraiser, a dinner dance in aid of MS-UK. The organising is done and it is set to be another great night.

Since I started this challenge and have completed 2 out of the 3 marathons with only London to go. We have now passed our £3,000 target and we’re on track to raise a further £1,000 before the end of November. And we have made plans for our mum to travel down to London next year to see me finish the next marathon.

Although I am delighted to be fundraiser of the month I have to give credit to everyone that has put in so much of their time and effort for this cause. If it wasn’t for the support and encouragement of all my friends and family, our fundraising efforts would not be this successful.


Find out more about fundraising at MS-UK. Just call us on 01206 226500 or visit our website to complete our contact form.

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