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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

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

 

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 

 

BBC Look East hosts NHS70 debate live...

Posted on: July 12 2018

BBC Look East presenter Susie with LMay.jpgOur very own Laura May reports back from the BBC Look East panel debate about the future of the NHS...

Last week, I went along to a live BBC Look East television panel debate all about the future of our National Health Service, to mark the 70th anniversary of the NHS.

Hosted at the new Anglia Ruskin School of Medicine in Chelmsford, the event was broadcast live on BBC Look East on BBC1 in the East of England at 6.30pm. Radio Essex were also live from the lecture theatre.

The debate, which was led by presenter Susie Fowler-Watt, posed questions about the future of the NHS. The primary focus was on funding, as may be expected, but from the debate there was no clear answer to the funding gap that now faces the NHS. Some treatments, deemed ‘cosmetic’, were seen as a possible area to cut costs, while Susie also called into question the number of management staff involved in the running of the NHS, rather than medical professionals.

Something all of the panel and audience seemed proud of was the cornerstone of our health system – the NHS was launched on the premise that treatment would be ‘free’ at the point of entry, paid for overall by taxes. There seemed to be a strong feeling that this should continue, but no knowledge of how to keep the service this way for the future.

It was a great experience to watch ‘live’ broadcasting, and I came away from the event proud of our NHS and how it supports people across the country every single day. I am, however, concerned that it will be those that cannot afford treatment who will suffer if we begin to charge a fee for healthcare. But for now, the NHS remains free at the point of entry.

If you would like to information about NHS services in your area, please get in touch with the MS-UK Helpline. You can call us on 0800 783 0518, email us or use our live web chat service.

Paralympic athlete announces accessible clothing design collaboration with fashion brand ASOS

Posted on: July 06 2018

Chloe Ball-Hopkins - ASOS 1.jpgChloe Ball-Hopkins, GB Paralympic athlete, has announced on Twitter that she has been working with the fashion label ASOS to produce a range of clothing specifically designed for people with disabilities.

Announcing the news on Twitter yesterday, Chloe said: 'So over the last several months I have been working with @ASOS to create a fashionable, yet practical waterproof all in one! Not just for people like me in a chair but for anyone. It's about making fashion accessible!'

She was quickly inundated with positive reactions from her followers, with many thanking her for her efforts.

One follower said: 'Thank you so much! I love it so much! We need more people like you!'

Helen Eccles said: 'Brilliant! This is the most positive tweet to have appeared in my feed all week. We need more fashion companies to embrace accessibility (in its widest sense) to meet the needs of all their customers.'

The jumpsuit, which is part of ASOS’s DESIGN range costs £50.00. However, it is no ordinary jumpsuit. It’s been adapted to be wheelchair friendly, with the jacket and trousers zipping together, and a hem which is little longer at the back to stops it from riding up. It is also fully waterproof, including the zips and has adjustable cuffs and sleeve lengths. Not only is its tie-dye design fashionable and reflect festival style, it has a soft jersey lining which offers comfort and warmth too.

Accessible clothing ranges are few and far between and they aren’t always as fashion forward as many of the high-street ranges available for able bodied people.

Chloe said she thought the zip around the waist top and bottom would make it easier to get in and out of and the cuffed ankles allow for shorter people and wellies. The top also has a waterproof pocket for a phone or medical stuff. 'The key is its fashion that’s accessible, not for [the] disabled,' she added.

NHS at 70 and the next 70 years...

Posted on: July 05 2018

Hello,Photo of Laura May from MS-UK

This evening I have been invited to attend a live television panel debate about the future of the NHS, as the country marks the 70th anniversary of the National Health Service. 

Back in 1948, the NHS was launched on the premise that treatment would be ‘free’ at the point of entry, paid for overall by taxes. The new service saw 97% of the public register with their local doctor and this meant the policy makers of the day saw the NHS as a glorious success. (1)

So, this evening I will be sitting the in audience as BBC Look East broadcast their live debate from 6.30pm. They will be exploring questions about the cost of the NHS, its future and what it may look like in the future. I am interested to hear what some people think the answers may be...perhaps higher taxes, charges for certain treatments, privatisation?

I would like to know what you think and how you imagine the NHS in the future? Please join our discussion on Facebook at www.facebook.com/MultipleSclerosisUK and let me know your thoughts.

I will write a follow up blog after this evening and let you know where you can watch the debate and what topics crop up, but until then I say ‘Happy Birthday!’ to the NHS!

Laura

Laura May, Marketing Manager

(1) BBC, A brief history of the NHS

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