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Friends of MS-UK Awards 2018 - Miss Sparkle!

Posted on: August 10 2018

Suzy Cohen.pngMeet the winners of this year's Friends of MS-UK Awards!

Every day this week, we'll be revealing each of the well-deserved winners and finding out, in their own words, what it means to be awarded such an accolade...

Suzy Cohen aka 'Miss Sparkle'

Since 2011, ‘Miss Sparkle’ has been inspiring those around her to support MS-UK. Susan has raised over £21,000 for the charity and has run eight marathons, not to mention taking part in many other events! Above all, Suzy has made an amazing achievement this year, as she has enabled MS-UK to reach out to 28 new supporters, all of who are runners Suzy has recruited into the Virgin Sport British 10k event.

Susan has always been surrounded by multiple sclerosis (MS), through friends and family, and chose to fundraise for MS-UK because we offer practical, unbiased information and support to anyone affected by MS.

She said: 'This award comes as a little bit of a surprise, but I feel very humbled to even have been considered. I’m just doing what I do best and that’s running, then boring everyone so much that they sponsor me just to shut up! I’m looking forward to receiving the trophy, which I will display very proudly next to my ‘MS-UK sponsor me’ table where I work, I’m sure people will feel even more generous for future events.'

 

Run for MS-UK

Friends of MS-UK Awards 2018 - The Many Marathon Man!

Posted on: August 09 2018

Meet the winners of this year's Friends of MS-UK Awards!

Every day this week, we'll be revealing each of the well-deserved winners and finding out, in their own words, what it means to be awarded such an accolade...

Chris C.pngChris Chandler

When Chris’ wife Jennie was diagnosed with multiple sclerosis (MS) in 2011, they turned to MS-UK for help. Since then, Chris has run in aid of MS-UK...and run, and run, and…

In 2013 Chris ran the Virgin Money London Marathon and since then he has applied dedication (and endless hours) to reaching an amazing milestone – completing 100 hundred marathons in aid of MS-UK. That’s over 2,500 miles!

This year, Chris officially joined the 100 Marathon Club when he completed his 100th run at Betteshanger Country Park.

He said: 'I am delighted to receive this award, it was a nice surprise. It has been a pleasure to help raise money for MS-UK and watch them grow and develop over the years. I have fundraised for them and see how the money myself and others raise goes to good use.'

Top 5 books about multiple sclerosis

Posted on: August 09 2018

Hello,

As today is Book Lovers Day, I couldn't resist asking staff at MS-UK what their favourite books are about multiple sclerosis (MS).

So, here's the top 5...

  1. The Multiple Sclerosis Diet Book: A low-fat diet treatment of MS by Roy Laver Swank MD, PHD and Barbara Brewer Dugan
  2. Managing Multiple Sclerosis Naturally: A self-help guide to living with MS by Judy Graham
  3. Overcoming Multiple Sclerosis: The evidence-based 7 step recovery program by George Jelinek
  4. The Wahls Protocol: A Radical New Way to Treat All Chronic Autoimmune Conditions Using Paleo Principles by Terry Wahls
  5. Awkward Bitch: My life with MS by Marlo Donato Parmelee

Check out Amazon for the books if you want to!

Happy Book Lovers Day everyone,

Laura

Marketing Manager, MS-UK

 

 

 

Friends of MS-UK Awards 2018 - The Guru!

Posted on: August 08 2018

Meet the winners of this year's Friends of MS-UK Awards!

Every day this week, we'll be revealing each of the well-deserved winners and finding out, in their own words, what it means to be awarded such an accolade...

Trishna.pngTrishna Bharadia

You may recognise this name, as Trishna is not only a spokesperson within the MS community, but she also writes for New Pathways magazine.

For several years now Trishna has made a significant contribution to New Pathways magazine, from reviewing the Sym-Trac app way back in 2014 right through to cropping up in the last issue when she won the inaugural Eyeforpharma Patient Advocate Award (Europe) 2018.

A passionate advocate for sharing patient voices, Trishna works tirelessly to raise awareness of MS and inspires our readers.

She said: 'It totally made my day when I found out I was being given this award! I've thoroughly enjoyed everything I've done with MS-UK, particularly writing for New Pathways. I really hope that when people see what I do, it will inspire others to get involved with MS-UK and play an active part in the MS community. For me, this is the most important thing because together we can not only help and support each other better, but we will also have a stronger voice for all those affected by MS!'

Friends of MS-UK Awards 2018 - Wellness Warrior!

Posted on: August 07 2018

Meet the winners of this year's Friends of MS-UK Awards!

The annual Friends of MS-UK Awards were launched in 2016 to recognise the commitment and valued support of some very special people. Each year we present just five awards to those who have gone above and beyond to support the charity and raise awareness of multiple sclerosis (MS). Many thousands of people make our work possible each year, so selecting just five is a tough task, but it makes the awards even more special to us and those who receive them.

Every day this week, we'll be revealing each of the well-deserved winners and finding out, in their own words, what it means to be awarded such an accolade...

 

Brendan.pngBrendan Gordon

Upon joining us in January 2016, Brendan became an important member of our volunteering team, supporting clients at our Wellness Centre Josephs Court, often three or four times per week!

Brendan’s dedication enabled MS-UK to provide support to people affected by MS and other neurological conditions, and he gave us many hours of professional support.

He said: 'To be honest, I feel quite humbled and proud to get this award, it’s not something I ever thought about. I enjoyed volunteering at Josephs Court as soon as I started, there is something about the place that draws you in.'

Friends of MS-UK 2018 award winners revealed!

Posted on: August 06 2018

Meet the winners of this year's Friends of MS-UK Awards!

The annual Friends of MS-UK Awards were launched in 2016 to recognise the commitment and valued support of some very special people. Each year we present just five awards to those who have gone above and beyond to support the charity and raise awareness of multiple sclerosis (MS). Many thousands of people make our work possible each year, so selecting just five is a tough task, but it makes the awards even more special to us and those who receive them.

Every day this week, we'll be revealing each of the well-deserved winners and finding out, in their own words, what it means to be awarded such an accolade...

Simon Gauge

2016 Simon Gauge_Marathon_large_Jpg025.jpgIn 2016, Simon raised the most amount of money in aid of MS-UK for a single event when he undertook the Virgin Money London Marathon. Simon’s efforts to achieve an amazing total of £33,000 had a real impact on our work to support people affected by multiple sclerosis (MS).

Simon was inspired to run by his brother Phil, who lived with Primary Progress MS. Simon continues to share memories of Phil and his eternal sense of humour, inspiring others to support MS-UK in the future.

Simon said: 'Thank you very much for the award. Running a marathon to raise money was nothing compared to the challenges that I saw MS present to my brother Phil and I dedicate the award to him. He never let MS define him and fought his battle with dignity. It is a comforting thought that the money raised would offer support to others to do likewise.'

New Pathways issue 110 - The Editor's Letter

Posted on: August 01 2018

Hello!Issue 110 Front Cover of New Pathways

This issue of New Pathways magazine is jam packed full of a variety of news, features and real life stories. Start your read by catching up on all the latest developments in MS on pages 4-10. Then why not discover nine anti-inflammatory foods that could benefit your diet and MS on page 34.

Next we take a look at how a condition that predominantly affects women, actually impacts men on page 12. And on pages 30 and 32 MSer and feature writer Ian Cook revisits Access to Work and gives electric wheelchairs a spin.

Stem cells research and personal stories are still dominating the news, so we thought we would produce an update on this ever popular treatment option on page 24.

Also in this issue, MSer and HR Specialist Rebecca Armstrong explains how to get the best out of occupational health on page 16, we take a look at the therapeutic benefits of horse therapy on page 18, and Rosalind Barton reveals the highlights of her surprisingly accessible trip to Singapore.

Subscribe today to read all this and much more!

Sarah-Jane

Editor, New Pathways

Remap awards the achievements of its dedicated volunteers

Posted on: July 31 2018

Recently Remap, a national charity that works through local groups of skilled volunteers to help disabled people achieve independence and a better quality of life, held an awards ceremony to award its volunteers for the great work they have done. 

The ceremony was held in London, with awards presented by Dave Henson, engineer and Paralympian, who said, “I am blown away by the ingenuity of Remap’s engineers. They are coming up with some really unique, creative solutions which have a massive impact on people’s lives.”

The talented makers, inventors and engineers submitted a strong field of applications for the awards, which this year included the Able Magazine Award.

The winners were:

Image of helping handle being used

Helping handle...

This gadget was devised for Bob Crump, a paraplegic who enjoys off-road driving. He has a hand-controlled Range Rover but was experiencing great difficulty in moving from his wheelchair to the car unassisted, due to declining upper body strength.

Remap volunteer David Tappin solved the challenge by making a simple lightweight frame which clips onto the vehicle’s door hinges to provide a stable handle. This enables Bob to use both hands and arms to lift himself from his wheelchair to the driving seat.

Thanking Remap, Bob said: “The handle David Tappin made allowed me to not only continue my off-road driving but also enabled me to get out much more for general day to day activities, which I had started to avoid, therefore improving my quality of life. I can’t put into words how grateful I am to Remap and especially Mr Tappin who generously gave so much of his time and expertise”.

The awards represent some ingenious solutions to problems faced by individual disabled people from across the country. Like all of Remaps equipment, each of these devices were given away free to its new owner, for whom it was specially designed. Remap’s team of hard-working volunteers help about 10 people every day, allowing people in their communities to stay independent, regain lost skills and discover new ones.

Watch the Helping Handle video on Remap's YouTube channel

MS-UK cyclists raise over £20k at Prudential RideLondon in the rain...

Posted on: July 30 2018

Hello,Photo of #TeamPurple at RideLondon 2018

Yesterday we had a huge team of 55 taking on the iconic Prudential RideLondon for MS-UK. The weather conditions were not the best and our cyclists were certainly challenged by the elements! They had to deal with constant rain, which affected visibility and high winds which turned the rain horizontal. The rain brought up muck on the roads, and one of our team members endured 6 punctures along the course! But they all completed the event with determination and a smile on their faces. During this 100 mile cycle event, cyclists whizzed past the iconic sights of London and took on the world-famous zig-zags of Box Hill.

I would like to say a huge thank you to #TeamPurple for taking on this ultimate cycle challenge, and for working so hard training and fundraising – especially in the hot conditions the UK has been experiencing recently. So far as a team you have raised a whopping £21,656! MS-UK are so thankful for this amazing effort...it means we can support even more people affected by multiple sclerosis (MS) and make sure we’re here to listen and offer information when we’re needed.  

As always, we can never do these events without our trusty volunteers! From cheering to handing out snacks, you were amazing at supporting our cyclists on the day, and you never seem to run out of that #TeamPurple energy and spirit - even in the pouring rain! If you fancy being part of the cheer squad, we would love your help supporting #TeamPurple at our events – just visit our website for more info. 

Check out our Facebook photo album of our fantastic cyclists!

If this has inspired you to cycle the Prudential RideLondon for MS-UK, please do get in touch with me as recruitment for the 2019 team will be open shortly! Just email me or give me a call on 01206 226500.

Thank you again to everyone involved – you make our work possible!

Best wishes,

Jenny

Events Fundraiser

Alternatives to residential care

Posted on: July 26 2018

Residential care.PNGFeature writer Rachel Coleman used to be a fulltime carer. Here she talks care choices.

Being diagnosed with multiple sclerosis (MS) can be a life-changing event. It can be a lot to take in and making sense of what it will mean can be daunting. You may be concerned about what this means for the future and whether you’ll have to move into a residential care home to get the support you need.

Even with growing support needs, it is possible to stay in the comfort of your own home. Private home care providers offer flexible support options on a visiting basis and even in the form of a live-in personal assistant, enabling you to have the best quality of life.

Let’s take a look at the alternatives to residential care.

Flexible support at home

MS can cause difficulties with mobility and communication. This can be incredibly frustrating for anyone living with the condition and these difficulties can pose unique issues, particularly with friendships.

Though a residential care home does offer round-the-clock support, for someone living with MS letting go of their home comforts and independence can be incredibly unsettling.

With home care, you can stay in the environment you know the most, with the same routines and friends and family nearby who can visit whenever they want.

Caroline Redman is Head of Customer Service at Helping Hands, and helps to arrange support at home for people living with MS. She says, 'We place a special focus on creating support plans that are flexible and completely built around each person’s unique needs. Whether they need visiting support at mealtimes, help first thing in the morning or late at night, all the way through to a handpicked personal assistant who’s there 24/7 and supporting with getting out and about and other day-to-day activities.'

This article is taken from issue 109 of New Pathways magazine. To read the full article, subscribe today!

Diana defeats the Yorkshire Three Peak Challenge!

Posted on: July 25 2018

07.2018 - DC Yorkshire 3 peak challenge (7).jpgClimbing three mountains is harder than climbing one. That's just basic maths. In our latest blog, Diana, Head of Services here at MS-UK, tells us how she beat the Yorkshire Three Peaks Challenge...

On Wednesday 23 May I received a text from my husband saying he was organising the ‘3 peaks thing’ as a fundraising event for his employer’s charity of the year. He said ‘it’s hard work but doable’ and ‘it’ll need quite a bit of training’! I casually agreed to it as long as I could fundraise for MS-UK.

Now, I consider myself to be quite fit. I play netball once a week and had recently completed the NHS Couch to 5K programme, running three times a week until the heatwave descended upon us.

07 July saw our training walk in Sussex – the Seven Sisters walk in 30 degrees heat while England were playing their quarter final against Sweden in the World Cup. It had been graded 9 out of 10 in terms of difficulty. After the 12 miles we completed I had nothing left in me. But my husband threw a Mohammed Ali quote at me ‘Train hard – fight easy!’.

5am on 21 July we are up and heading to the start line of the Yorkshire Three Peak Challenge. Our kit was checked and a briefing given and we were off. 24 miles in 12 hours was the challenge, reaching the summits of Ingleborough, Pen-y-ghent and Whernside. Being extremely competitive I started off keen but after finishing the first peak I wondered how I would ever complete the challenge.

Our group leader, a professional mountaineer encouraged us by calling us his ‘Warriors’! No time to rest, no time to take in the views, we just had to power on. Regular painkillers for the dodgy hips and we soldiered on.

I have to say this was the hardest thing I’ve ever had to do, but whilst I had my head down, and I was quietly battling my fatigue, I remembered why I was doing this challenge. As Head of Services at MS-UK I am inspired every day by people affected by multiple sclerosis. They were my motivation and what got me through.

I managed to complete it in 11 hours and 03 minutes and so far I have raised over £300 for MS-UK. Here is my fundraising page if you would like to sponsor me.

Professor’s hypothesis for MS cure gives people false hope

Posted on: July 25 2018

sarah-jane-300.jpgNow that I’ve got your attention I should apologise to Professor John Paul Leach, consultant neurologist at the University of Glasgow because the headline of this story isn’t entirely true. Unfortunately, all he is guilty of is doing his job and have a hypothesis for something we all want for multiple sclerosis (MS) – a cure.

Professor Leach has hypothesised that MS is caused by three-hits, strictly in order, in genetically susceptible persons. His three-tiered hypothesis is as follows:

  1. A clinic-epidemiological model of MS as a rare late complication of two sequential infections (with the temporal sequence of infections being important)

  2. A proposal that the first event is helminthic infection with Enterobius Vermicularis (threadworm), and the second is Epstein Barr Virus infection

  3. A proposal for a testable biological mechanism, involving T-Cell exhaustion for Epstein Barr virus protein LMP2A.

The professor and his team believe that this model satisfies some of the as-yet unexplained features of MS epidemiology, is consistent with the clinical and neuropathological features of the disease and is potentially testable by experiment.

Put simply it is thought that MS develops when a susceptible person contracts two separate common infections, threadworm and the Epstein Barr Virus, which cause the body to attack itself. Doctor’s now believe that if this in fact is the case, a vaccine for one of the conditions, such as the Epstein Barr Virus could be created to prevent future people developing the condition. 

Some of the main news outlets have sensationalised this story. Yes this is an exciting hypothesis, but if we will have to sit back and let the experts conducted experiments and clinical trials before we find out if this is truly an option for the future.

Professor Leach’s hypothesis was published in the journal Multiple Sclerosis & Related Disorders.

Blog by Sarah-Jane, Editor of New Pathways Magazine
 

Subscribe to New Pathways

 

Research shout out: Valuing Goals Study

Posted on: July 23 2018

Photo of Emma, lead of Valuing Goals studyEmma Britneff, a Trainee Clinical Psychologist from Royal Holloway, University of London is conducting a study to evaluate whether an online resource called ‘Valuing Goals’, which offers skills training in goal setting and action planning, can improve well-being for people with multiple sclerosis (MS). The study has been granted ethical approval by Royal Holloway Research Ethics Committee (REC Project ID: 717).

'Valuing Goals' is an online training programme that helps people to identify and work towards positive personal goals by teaching specific skills step by step. It has been designed by clinical psychologists and based on research that shows goal setting, planning skills and working towards valued goals are associated with high levels of wellbeing. Previous studies have found this programme to increase wellbeing and quality of life in the general population as well as in groups of people experiencing lowered wellbeing. Emma is now conducting a study to evaluate if the Valuing Goals programme can be as beneficial for people living with MS, and she is looking for volunteers to take part in the programme. 

How to find out more

If you would like the opportunity to have some online training in how to work towards personal goals, and to take part in some research please go to the link below for further information by clicking it or pasting it into your internet browser before 31 August 2018.

http://valuegoals.azurewebsites.net/participant-information/

Please note this is an external study.

The science of fundraising

Posted on: July 20 2018

Raising money for MS-UK shares a lot of the same fundamentals as classical chemistry. Mixing up elements can lead to surprising results, slightly twealking a formula can make a huge difference, and sometimes things happen that nobody can quite explain…

With that in mind, our science boffins (a few of us in the MS-UK office) decided to study the ecosystem of a typical fundraiser to see what they could learn. Here are their results…

 

Panic levels on event day

Graph 1.png

Fundraiser personality study

Graph 2.png

The anatomy of an event

Graph 3.png

New film from Shift.MS exposes the hidden symptoms of MS

Posted on: July 18 2018

New Pathways editor, Sarah-Jane Lampe, reviews Shift.MS's latest film 'Hidden'

On the 15 July I had the pleasure of attending the preview of Shift.MS’s latest multiple sclerosis (MS) film, Hidden. I knew from the title that it was going to focus on the hidden symptoms of MS and I wondered with intrigue how that might be portrayed. I will admit that I watched the trailer for the film before attending the premiere and was a little shocked by how scary it appeared to be, but I went with an open mind and was not disappointed.

The film itself tells the story of a young woman called Keisha, played by actress Saskia Horton, who is unknowingly experiencing the hidden symptoms of MS. Told by her doctor that her symptoms are nothing to worry about, she goes about her daily life and we, the audience, see the different symptoms she is experiencing. The symptoms are illustrated very cleverly with the use of effects, doppelgangers and the popularised street dance called krumping. This form of dancing is characterised by free, expressive, exaggerated, and highly energetic movement, perfectly suited to what was set to be a battle with MS.

The character lashes out at her doppelganger expressing frustration and anger through the selected method of dance. We see her struggle with fatigue and coordination issues, such as opening a door or pushing a button in a lift, tasks that what would seem simple to the outside world.

It is only when the young son of another character already diagnosed with MS called Kirstie, played by Amber Doyle, notices Keisha struggling and asks his mum to speak with her. It is only then that Keisha begins to understand what is happening to her and is able to tame her doppelganger. 

The film was funded by pharmaceutical company Roche and it was obvious from the outset that the production team had spent a lot of time, money and effort on it. The production has an artistic feel and is very slick.

The film’s director, Dan Henshaw had come up with the concept for the film, which originally had a much more gothic feel than the finished product. I was actually pleased about this when I heard because throughout history disability has been portrayed quite negatively with that stereotypical gothic look and feel. I think Shift.MS has Cathy John, a script consultant, who was involved in the process and happens to have MS, to thank for the softening of the original idea. It came across well in the final edit.

Once I’d seen the film, the trailer no longer seemed scary and I felt like I understood the reasons behind its shock and awe approach. The story of Keisha and her undiagnosed symptoms is, unfortunately, a common one and many people will relate to her. My only criticism is that I wanted to see more of Keisha living well with MS and I wasn’t very sure how she managed to tame her MS doppelganger. Making sense of what is happening and understanding your symptoms is one of the first steps, but did she go back to her GP, did she take a disease modifying drug, did she try a complementary therapy? How did she ‘tame the beast’?

I’d be interested to hear your thoughts, so feel free to email me at newpathways@ms-uk.org 

 

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