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Pins for Pounds

Posted on: February 21 2018

vlm-e-news-image1-2.jpgThis year is very special for MS-UK as we celebrate our 25th anniversary of supporting people affected by multiple sclerosis! So, how can you get involved? Well, you could be the proud owner of one of our limited edition anniversary pin badges! In 2018, we have a limited edition 25th anniversary pin badge especially for anyone who raises or donates £25 or more in aid of MS-UK! Whether you love getting active or prefer a cuppa and cake, fundraising for MS-UK is as much fun as you make it! Ways to support MS-UK…

Whatever you decide to do, we’re here to support you all the way. Contact the fundraising team using our online form. And good luck! Jill Jill Purcell, Fundraising Manager  

New year, new you?

Posted on: January 05 2018

blog-graphic-050118.jpgHi everyone, 

It’s that time of year again when the resolutions begin piling up and before you know it you have given up chocolate! Well, we don’t want to ask you to do something as drastic as that, but we would love it if you’d support MS-UK as we celebrate our 25th anniversary!

If health and fitness is your thing, why not join one of our fantastic events happening in 2018…

Colchester Half Marathon

MS-UK is based in Colchester, Essex so this one is right on our doorstep, and there’s still time to join the race! 2018 is a very special year for us too, as MS-UK will be charity partners for the Colchester Half Marathon on Sunday 25 March.

Apply today on the Colchester Half Marathon website.

British 10k

Join 25,000 pairs of feet as they pound the streets of one of the world’s most iconic capital cities on Sunday 15 July.

Apply today on our website.

Prudential RideLondon-Surrey 100
On Sunday 29 July the Prudential RideLondon-Surrey 100 will start in Queen Elizabeth Olympic Park before finishing on The Mall in central London.

Apply today on our website.

I would love to welcome you to #TeamPurple, so do check out our website for lots more fundraising ideas. Whatever you do in 2018, we all wish you lots of luck!

Best wishes,

Jenny

Events Fundraiser, MS-UK

Happy new year!

Posted on: January 02 2018

happy-new-year-1.jpgHello everyone,

Happy new year!

The MS-UK Helpline is now open again, so do get in touch if you would like any support or information about multiple sclerosis.

You can find out more about all of our MS services on our website, and of course if you are looking for a challenge in 2018 do check out our fundraising opportunities too!

We hope you had a fantastic new year, and if you missed it you can watch our Christmas jingle video on our YouTube channel.

Hello everyone,

Happy new year!

The MS-UK Helpline is now open again, so do get in touch if you would like any support or information about multiple sclerosis.

You can find out more about all of our MS services on our website, and of course if you are looking for a challenge in 2018 do check out our fundraising opportunities too!

We hope you had a fantastic new year, and if you missed it you can watch our Christmas jingle video on our YouTube channel.

Welcome back!

Love from MS-UK

Guest blog: Lee's volunteering story

Posted on: October 05 2017

In this guest blog Lee talks about volunteering with MS-UK in the marketing department...

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Hi I’m Lee and throughout the university summer break I’ve been volunteering behind the scenes, in the marketing department at MS-UK.

I spent a lot of time researching the organisation before deciding to get in touch, and as luck would have it a voluntary position was just about to be advertised, seeking a helping hand at making sense of social media data. As a chemistry student myself, I feel obliged to point out that chemists love number-crunching and spreadsheets – it’s like our third favourite thing to do after quoting Breaking Bad, and spelling our names out with chemical symbols. Needless to say I was keen to get involved and help as much as I possibly could.

What’s really struck me at my time here is the atmosphere – everybody is exceptionally warm and enthusiastic, making me feel like a welcome member of the team. I was even invited along to our team day at a working farm; quickly becoming the envy of my friends as my Snapchat story filled up with videos of pigs and pygmy goats.

I’ve done a ton of research and learned a lot while working on this project, but have also had plenty of opportunity to be creative too. I got involved in the filming and editing of our recent Choices leaflets video, which was a lot of fun as I tried my best to accentuate Ryan’s excellent performance on-screen. Several years from now, when an Academy Award inevitably finds its way through my letterbox, I’ll know exactly who to credit for kick-starting my Hollywood career.

It’s been a fantastic experience volunteering for MS-UK, I am very grateful for the trust and responsibilities I have been given, and I would urge anyone else considering it to get involved too!

Find out more about volunteering on the MS-UK website.

MS in the news

Posted on: October 02 2017

sarah-jane-300.jpgNot everyone has time to visit the news section on the MS-UK website every day (its ok, we forgive you), so here’s a summary of some of the latest developments in MS. 

I’ve got a gut feeling

Recently there has been a lot of news regarding gut bacteria, with some interesting studies highlighting how changes to gut bacteria could lead to a possible future treatments for MS.

Reading these stories, I found myself researching the different gut bacteria thinking maybe I should change my diet accordingly, but I quickly realised it’s not that simple.

More research is needed to get to treatment stages, but the signs are encouraging.

Click the stories below to read more about the latest developments.

And with tummies in mind, the latest issue of New Pathways magazine features a four-page feature about the Overcoming MS Recovery Program, one of a few popular diet choices for people with MS. Find out more by subscribing and why not try out the free recipe too? 

News for progressive MS

Scientists at Yale University have uncovered two closely related cytokines that may explain why some people develop progressive MS and could lead the way in developing a novel treatment to prevent progressive forms of the condition. Click here to read the news story.

Let’s talk genes

MS is not hereditary, but it is genetic and researchers at the University of Florida Health got everyone talking recently, when they revealed they had found a way to inhibit or reverse MS using a novel gene therapy technique that stops the condition’s immune response in mice.

Of the mice that received gene therapy, 80% went into near-complete remission after having hind-limb paralysis. This is a promising outcome, but more studies are needed.

Trial

Bexarotene, a drug that could help the brain regrow myelin in people with MS, has started its phase II clinical trial.

The trial is only open to people with relapsing MS who are currently on a disease modifying therapy (DMT). It will involve 50 people and the first person involved started their treatment in March.

Recruitment is taking place in Cambridge and Edinburgh, but not everyone will be eligible because of other important criteria.

The trial will run for four years to study the long-term benefits for people with MS.

For more information about the criteria for the trial click here. To access the trial you will need to be referred by your GP or neurologist

For more daily MS news, visit the MS-UK website.

Sarah-Jane

New Pathways Editor

The Queensferry Crossing

Posted on: September 19 2017

In this guest blog Ann Rice tells of her and her husbands walk over the Queensferry Crossing bridge in aid of MS-UK


ann-rice-3.jpgHi everyone,

On 03 September, my husband and I walked across the new Queensferry bridge over the river Forth. This was billed as ‘a lifetime opportunity’ as the bridge will carry cars and lorries and has no pedestrian walkway. There has been a huge public interest in Scotland, and a ballot was held for permission to walk the bridge. Only a quarter of the 200,000 applications was successful. We were among the lucky few.

This was very pleasing as we had walked the original Forth Road bridge when it opened in 1964. We were students in Sheffield and bet some friends (probably in the student bar) that we could hitchhike to the bridge faster than them. We won the bet, arriving at the bridge in the middle of the night. It was cold and sleeting. We then had to hitchhike back in the early hours of the morning.

ann-rice-2.jpgWalking the new bridge was an opportunity to raise a little money for one of my favourite charities. Our youngest daughter has had MS for more than 20 years. After the initial shock at the diagnosis, she scoured the web for information. Among the gloom and doom she found the MS-UK website (which had a different name then). They offered hope, encouragement and lots of helpful information. This is vital for any long term illness.

It was a great experience, people with children, buggies, wheelchairs and everyone happy to have won the lottery to take part.

Best wishes to you all,

Ann Rice

ann-rice.jpgann-rice-4.jpg

 

Watch our Choices leaflets video

Posted on: September 05 2017

Hi everyone,

In the past month we’ve been updating some of our Choices leaflets, and you can now read them on our website.

Watch our short video today about how we update our Choices leaflets.

We have updated our leaflets about…

  • Bladder and bowel symptoms
  • Vitamin D
  • Personal Independence Payment (PIP)
  • Useful organisations

If you have any questions about any of the topics covered in our Choices leaflets, you can get in touch with me to any of the MS-UK Helpline team via live web chat or by calling us on 0800 783 0510.

Best wishes,

Ryan

MS Advisor

Do you live in Essex? Vote for us!

Posted on: May 26 2017

fundraising-team.jpgHello everyone!

We wanted to let you all know about an opportunity for MS-UK that we didn’t want to miss!

We are hoping to be TSB Colchester’s charity of the year, and this is where we need your help. Selections will be made on how many nominations the charity gets from the public. Please take a moment for vote for us and ask friends and family to vote too!

Nominate MS-UK today using the online TSB form!

Some information that may be useful for the form:

  • Our charity registration number is 1033731
  • Our email address is Jill@ms-uk.org and the best person to contact here is Jill Purcell
  • The question about what the organisation does has a 255 character limit
  • The postcode of the charity is CO2 8JF…please choose the Colchester Branch of TSB when it asks you!

The nominations close at 5pm on Tuesday 30 May.

Thank you for your help!

The fundraising team at MS-UK

9 ways to get the best out of your neurology appointment

Posted on: April 26 2017

blog-promo.pngClinical Nurse Specialists in MS, Julie Webster and Helen Willis give their top tips...

  • Make notes before you come to your appointment with what​ you want to discuss. Bring specific questions and/or a diary of symptoms with surrounding circumstances
  • Bring a list of medications you are on, the dosage and regularity. Not just MS drugs either – any medication you are taking
  • Bring someone with you – It never hurts to have a second pair of ears
  • During the appointment say the top three things that are bothering you
  • You don’t have to follow the advice given, they are just suggestions. It is a two-way conversation. You will not be penalised for not taking the advice
  • Before you leave – check. Have you understood everything? Have all your questions been answered? Do you understand what is going to happen next?
  • If you have had a blood test ask how and when to get results?
  • Don’t be afraid to email or call the MS nurse if you want your blood test results
  • Check your personal details are up to date, GP, address and telephone number

Additional information You should be seen by your MS nurse every year, but if all is well most can do a review over the phone. If you are on a disease modifying treatment you should be seen every 3-6 months by your nurse or consultant. Want to chat? The MS-UK Helpline is open Monday to Friday. You can call us on 0800 783 0518 or chat with us online via our live web chat service.

National support and information about multiple sclerosis

Posted on: April 25 2017

the-ms-uk-helpline-team-kim-ryan-and-laura.jpgHi everyone, As it is MS Awareness Week, I just wanted to let you know about our national services that we offer here at MS-UK to supporting anyone affected by multiple sclerosis.

In my role at MS-UK I work on our Helpline. We are open Monday to Friday, 9am to 5pm, and we can give you all the information you need to make your own decisions. I answer questions about a range of topics, such as benefits, treatments and travel. There really are no taboo subjects, and because MS-UK does not accept any funding from the NHS or pharmaceutical companies, we can remain completely unbiased.

You can call me or any of our Helpline team on 0800 783 0518, or use our live web chat service online. We also have a telephone interpreting service for anyone with limited English or no English at all. Just visit our website to find out more about this.

np-102a.jpgWe also produce information about multiple sclerosis, including our Choices leaflets. We cover topics like treatment, symptoms and life with MS. We have some useful downloads on our website such as the newly diagnosed booklet which you can download or order a free printed copy of. We also have a symptom diary which can be handy for when you have an appointment with your MS nurse or GP.

Our other national service is the bi-monthly magazine, New Pathways. Available in print, audio CD, plain text or online via the My MS-UK app, New Pathways covers MS news, research and topics you need to know about. At MS-UK we feel it is vitally important to share the real life stories of people affected by multiple sclerosis, and New Pathways gives us a chance to do this and showcase opinions and views.

You can find out more about New Pathways on our website. Should you need any support of information, please do get in touch, as we’re always here to help, Best wishes, and have a great MS Awareness Week!

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Kim Salmon MS Advisor, MS-UK Helpline

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