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Last chance to join us at the MS-UK Summer Ball!

Posted on: June 30 2016

singer.jpgHi everyone,

With our annual Summer Ballfast approaching at the magnificent Le Talbooth, Dedham on Friday 08 July, I just wanted to let you know there is still a chance to book a last-minute table!

This amazing evening includes pre-dinner drinks on the lawn from 7pm, a three course meal and of course live entertainment and a chance to dance the night away at our disco. Every penny raised from the evening helps us ensure we can continue our vital work supporting anyone affected by multiple sclerosis.

You can book a last minute seat for just £65, or get a table for £650 – it’s a magical night, and I know it will be lots of fun all in aid of a great cause. Email me today at mark@ms-uk.org or call me on 01206 226500!

We all here are really excited that the Summer Ball is just a week away and let’s hope the weather is kind so we can enjoy the beautiful grounds that Le Talbooth has to offer.

See you there!

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Mark Drain

Community and Events Fundraiser, MS-UK

Summer tunes competition!

Posted on: June 28 2016

Hi everyone,

Want to win a mini Myles teddy bear to take on holiday with you? Of course you do! We have four bears to give away, and all you have to do to be in with a chance of winning is send me your favourite Summer song.

How to enter:

  • Email me at john@ms-uk.org the title and artist of your favourite Summer song before 4pm on Friday 01 July
  • Tune in to our Twitter or Facebook feeds on Monday 04 July from 9am to find out if we play your song in the morning
  • I will contact you if you’re a winner to find out your full postal address on Monday 04 July, and get your mini Myles in the post to you!

msukshoot054.jpgThe first four songs we play on Monday will win a mini Myles teddy bear plus some MS-UK goodies…

Good luck everyone!

John 

Website Manager, MS-UK

British 10k - Top 5 running songs

Posted on: June 27 2016

runsongs.pngWith the British 10k less than two weeks away we thought it would help our fabulous runners to add the top 5 running songs to listen to on their way round London to their playlists!

Our resident radio DJ, John has come up with his top 5. If you can suggest yours, we would love to hear them! Send your top 5 running songs to John@ms-uk.org.

John’s Top 5.

1. Bruce Springsteen – Born To Run

2. Taylor Swift – Shake It Off

3. David Guetta – Titanium ft. Sia

4. Red Hot Chili Peppers – Can’t Stop

5. STARSET – Let It Die (The Maniac Agenda Pleasant Nightmare Remix)

The British 10k is on Sunday July 10, and if you love running, and fancy a challenge we still have a couple of places, so call Mark on 01206 226500 or email him at mark@ms-uk.org.

Guest blog: 468 Shades of Rebif

Posted on: June 27 2016

Stanca Potra lives with a diagnosis of multiple sclerosis, and uses Rebif for treatment. In this blog, Stanca talks about being inspired to create new artwork from used Rebif syringes.

Rebif is a disease modifying treatment (DMT) for multiple sclerosis. Not everyone with MS will benefit from DMTs in the same way. If you would like more information about DMTs read our Choices leaflets or contact the MS-UK Helpline.


A couple of weeks ago I forgot my Rebif ( interferon beta-1a) shot for the first time since I started the immunomodulatory treatment for multiple sclerosis, three years ago. It felt a bit dramatic, as if I was about to have a relapse before I had time to go back home, take it again and get back on track. 

I got so used to my Rebif routine that it became addiction. I suddenly felt light-headed, accompanied only by my vertigo syndrome, I sometimes experience. Of course, I got home safely and the drama ended as soon as the liquid crawled under my skin. But then I realised how faithful I have been to Rebif all this time. For three years, not one missed shot. I took them no matter the circumstances: in public bathrooms, in the car, on a boat, at parties and on holidays. I stashed them in drawers, boxes and jars, left some in my purses, backpacks and even pockets. Everywhere I look, I seem to find a needle. I didn’t throw them out, I didn’t recycle them, I just kept them as some kind of evidence of what has been done.

So in honour of completing three years of three-times-a-week of self-injecting, I decided to do something with all those empty 468 Rebif syringes.

I filled them up with acrylic colours and made some kind of work of art over one of my own
paintings.

It’s a painting of a dancing girl that swirls and spreads colour around her, the dress vibrating under rainbow shades. It’s the same way I feel about my life. So I realised that for every 44micro-units of tedious liquid, from each shot of Rebif that goes inside me, I can reflect 44micro-units of vibrant colour. After all, we all need to make the best of what we have:)

I started “stabbing” the canvas and as the syringes made their way through the material, it got harder and harder to find a good, unused spot, where a new Rebif could have its place. The same goes for my body. Rebif night gets longer just because I’m on the hunt for the new perfect spot where I can self-inject. And as you can see from the filed-up canvas, not all of them stand up pretty and perfect. Just like the ones that found their way through my skin, not all of them were perfectly inserted. Some teared up my flesh, some hit a muscle and some just pierced a nerve that still hurts today.
You can see them all right there, bent, straight or even fallen under their own weight. What you don’t see is what goes on behind the canvas. From aches and sores, to straight paranoid, you get your MS symptoms mixed up with side effects from the interferon treatment and even with symptoms so unrelated to anything you might think you’re loosing your mind. When something hurts, sores or tingles, I can’t really be sure if it’s MS related, Rebif related or I am just hypochondriac. So I just don’t think about it anymore, I shake it off and say it’s nothing. It probably is, anyway.

So if anybody wants to see what it looked before, this is the original painting:

I know that to most people around me, that’s what three years of Rebif looks like…Like nothing ever happened. But I felt the needle of each shot of Rebif, I felt the side-effects of each interferon unit, so to me, the painting looks like this:

Symptoms of multiple sclerosis are often unseen. Tiredness, pain, muscle weakness and spasms, difficulties in coordination, as well as sensory issues are not tangible to people around us. But that doesn’t mean they don’t exist. Multiple sclerosis has more then 468 shades of expressing itself, and three years can represent just a break between flares.

A painting full of syringes is only the beginning of a lifetime alongside multiple sclerosis, but my life has more colour than all side-effects interferon and MS have combined.
See more pictures of the creative process online today.

We went to the first local junior Parkrun!

Posted on: June 24 2016

Hello everyone!

It’s Mike here (you may remember me as Hunk of the Month) and I wanted to share with you news about our first time at the Colchester junior Parkrun!

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On Sunday 19 June, MS-UK were invited to bring our beloved mascot Myles the bearto the first ever junior event held near our offices in Essex, and it was an amazing day!

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Myles meets the Mayor of Colchester!

 

What a morning! Over 130 children and their families attended the event and the children ran 2k to reach the finish line. Everyone taking part completed the course, and there were lots of proud parents.

It was great to see the Colchester Gazette there covering the event, you can check out the article about the event on their website. Also, we have some awesome photos on our Facebook page which you can view today.

 

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Our mascot Myles took part in the warm up, he had some great moves, and I think Myles should bring out a fitness video!

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If you have a fundraising event coming up, and you would like Myles to be there, just email Mark@ms-uk.org and we’ll let you know if we can make it.

See you soon,

Mike

Eamonn's story - the 555 Neurology Project

Posted on: June 21 2016

On Wednesday 08 June, Healthwatch Essex and MS-UK hosted the launch event for the 555 Neurology Project report.

Eamonn, a focus group attendee who lives with motor neurone disease, wanted to share his story but was on holiday when the event happened! In this blog, you can view a short video by Eamonn describing his experiences.


A big thank you to Eamonn for creating this film for us to share, and for helping us make a difference to people being diagnosed with neurological conditions in the future in Essex.

Find out more about motor neurone disease on the MNDA website at www.mndassociation.org.

Please note – all of the opinions expressed in this film are Eamonn’s personal views.

Your voice counts...

Posted on: June 21 2016

the-ms-uk-helpline-team-kim-ryan-and-laura.jpgHi everyone,

We are refreshing our Choices leaflets for people affected by multiple sclerosis (MS) and we need your real life experience to help us shape them!

If you have been diagnosed with MS, then you can help us by taking a quick survey online today.

Thank you so much!

The MS-UK Helpline team

P.S. The survey closes on Monday 27 June at 4pm.

We are refreshing our Choices leaflets for people affected by multiple sclerosis (MS) and we need your real life experience to help us shape them! If you have been diagnosed with MS, then you can help us by taking a quick survey online today.

Thank you so much!

The MS-UK Helpline team

P.S. The survey closes on Monday 27 June at 4pm.

 

The British 10k is coming - are you up for volunteering?

Posted on: June 20 2016

Hi everyone,

If you fancy getting out of the house and making the most of the summer, come and join us at the British 10k on Sunday 10 July. This great event has an amazing atmosphere and we are always looking for volunteers to come and help cheer on our runners!

british-10k.png get-involved.pngdo-your-own-thing.png

You will get such a sense of pride seeing all our runners go past and also getting to know them after at our post-race meet up in St Jame’s Park, but don’t just take my word for it!

Look below at what a couple of our volunteers say about volunteering for MS-UK…

‘I know how important volunteers are to a charity and I feel like I am actually helping the charity by volunteering and I always have fun, and meet inspirational people.’ Laura

‘I enjoy volunteering because it gives me a sense of achievement and doing something positive. I enjoyed helping out MS-UK during the Virgin Money London Marathon and everyone was friendly so I was more than happy to help out again. It’s a little way of giving something back.’ Sheena

We would love to see as many of our awesome supporters at our cheering point as we always try to be the loudest on route! Do contact me today via email or give me a call on 01206 226500 if you can spare a couple of hours on Sunday 10 July.

Happy volunteering!

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Mark Drain

Community and Events Fundraiser, MS-UK

5 keys themes to be included in the diagnosis conversation...

Posted on: June 17 2016

Hi everyone,

We recently ran the 555 Neurology Project with Healthwatch Essex and the Essex Neurology Network. The people who attended our focus groups described their diagnosis conversation to us, with a range of themes emerging.

Some had been guided through the diagnosis conversation expertly by neurology professionals, and some felt steps had been missed out and the journey could be improved.

I wanted to share this quick snapshot of the 5 themes:

While there are five key themes, participants felt strongly that these are not mutually exclusive, and that each needs to be acknowledged at the same time – during that diagnosis conversation.

If you would like any support with diagnosis, or just have some questions, do contact the MS-UK Helpline via our live web chat service or by calling 0800 783 0518. You can also order a copy of our newly diagnosed booklet by visiting www.ms-uk.org/newdxpack.

Thank you again to everyone who took part in the 555 Neurology Project, we couldn’t have done it without you!

Best wishes,

Laura May

Marketing Manager, MS-UK

Fundraiser of the Month - Justin Ellis

Posted on: June 15 2016

I’m Justin Ellis and I took part in this year’s London to Brighton run to raise money for MS-UK. I chose to fundraise for MS-UK as I have a friend who lives with multiple sclerosis who has promoted the excellent work they do, making my decision to raise money for them as part of my London to Brighton challenge fairly easy!

I entered to take part in the run over a year ago having seen a few of my friends complete the 62 mile challenge in 2015. I started training in January which included completing 8 marathons, one thirty mile and one forty mile run.

The race day itself was the last bank holiday weekend in May with a very early alarm call (3am) with the run starting at 6.45 in the morning. I ran the whole thing with my fellow partners in crime Danny and David, putting the world to rights and there was plenty of banter flying about. I completed the run in 17 hours and 41 minutes finishing in the early hours of the morning. My lasting memory of the day is the numerous stiles we had to negotiate. If I never see another stile again, I will be a happy man.

In total I have raised £300 for MS-UK. I work for Lloyds Banking Group who have been really supportive of the challenge and promoting the fundraising for MS-UK. This consisted mainly of sharing my Just Giving page with family, friends and colleagues. I really enjoyed completing the London to Brighton Challenge and having the opportunity to raise money for such a worthy charity. My Just Giving page will be open for a few more weeks for anyone reading this wanting to make a donation.

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