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Local man smashes London Marathon target after revealing MS diagnosis

Posted on: June 15 2018

A Colchester man who recently revealed his diagnosis of multiple sclerosis (MS) has made history by raising the £2,000 needed to run the 2019 Virgin Money London Marathon for MS-UK in just four days, smashing the charity’s record.

Since opening up on his blog about his MS and his struggles with mental health, Tom Cutts, 26, has attracted 107 supporters to his JustGiving page and raised a stunning £2,330*, cementing his place in next year’s prestigious race in less than 96 hours.

The former Wivenhoe Town footballer was diagnosed with MS in October 2017 after feeling pain in his chest, head and stomach. Since then he has admitted to falling into depression as he struggled to come to terms with a future living with the incurable neurological condition.

Mr Cutts said: “At first I thought it [the pains] could be to do with the usual stress of work but even with medication these pains never subsided.

“Getting that diagnosis sent thoughts spiraling throughout my mind. The first once was ‘what is multiple sclerosis?’ I’d only ever heard the word one or twice in my life but never knew what it meant.

“My diagnosis has caused me to fall into depression, my anxiety levels have skyrocketed and at times so have my stress levels. Coming out of depression takes time, there’s no one-click solution.”

When asked about how he felt about raising the money in record time, he continued: “The response I have received on my sponsorship page has left me speechless.

“To hit my target in less than 96 hours and to raise over £2000 that quickly doesn’t feel real. Recording MS-UK’s quickest time to hit this mark has made me feel privileged to have so many great people in my life who have allowed me to achieve this. It has been one of the most amazing experiences I’ve ever had.

“Since announcing my diagnosis to the public on Friday evening I’ve received so many messages of support from friends and people around the world that it has been hard to manage all these conversations at once.

“As well as raising money for MS-UK, my aim is to raise awareness of both MS and mental health, which are both very personal to me.

“Sharing my experiences of MS and opening up about my depression was important to me as even though I am going through a hard time in my life and struggling inside, if I am able to help just one person then my blog is a success.

“I hope to help people realise that they are not alone with these battles in life. People keep telling me that I am inspirational but to me I’m just being myself!”

You can visit Tom’s JustGiving page www.justgiving.com/fundraising/tomcuttsmsuk or read his blog www.mscontroltomajortom.com

 

*Figures as of 13 June 2018

Hello! I'm Callum Winterford, the new Marketing Officer at MS-UK

Posted on: May 02 2018

Picture of Callum Winterford, Marketing Officer at MS-UKIntroductions can be awkward. There are no rules to meeting someone new. Do you shake hands? Do you go in for a hug? What if you go in for a hug and they open up for a handshake and you end up doing some kind of weird, welcome dance that is neither one nor the other? Then you have to smile and laugh and pretend that the last few seconds never happened, making sure to maintain as little meaningful eye contact as possible. My palms are clammy just thinking about it.

That’s why digital introductions are so great. You can grab a keyboard and mouse and dive straight in.

My name is Callum Winterford and I’m the new Marketing Officer at MS-UK. I’ll be the charity’s new face on Facebook and twit on Twitter, spending time sharing news stories and blog posts, responding to your questions, and engaging with our amazing community. I will also be taking over the reins of the MS-UK blog, so if you fancy writing a few words for us you can drop me an email at callum@ms-uk.org.

I’m really looking forward to being a part of the MS-UK family and getting to know our supporters. Here’s hoping that 2018 is the purplest year yet!

Last chance to take our annual survey!

Posted on: April 30 2018

Today is the last chance to take our annual survey online!

Every year we run our annual 'Getting to know you' survey, asking you to tell us a bit about yourself.

We do this so that we can make sure we are always providing services that really meet your needs, and so that we ensure we are reaching as many different people as possible that want multiple sclerosis information (MS) or support.

In the survey we'll be asking questions all about you - from how old you are to what MS-UK services you may have used in the past. Everything is completely anonymous, and we won't be asking you for any contact details at all.

Complete the survey now.

You can take the survey online up until 5pm today - thank you for your help!

Virgin Money London Marathon opened by the #SpiritofLondon winners

Posted on: April 19 2018

Wednesday 18 April saw the opening of the Virgin Money London Marathon Expo, the event that kicks of the marathon and where this year’s runners register to receive their official running number for Sunday’s big event.

This year’s expo was opened by the Spirit of London winners Matthew Rees and David Wyeth. Swansea Harrier Matthew famously helped David, whose legs began to buckle beneath him due to exhaustion, down The Mall to the finish line in last year’s race. It was that very moment that encapsulated the unique spirit of the Virgin Money London Marathon and inspired the theme for 2018.

Matthew and David are the first winners of the new Spirit of London award, followed by former boxer Michael Watson, who completed the 2003 London Marathon 12 years after suffering severe brain injuries in a world title fight against Chris Eubank. Watson spent 40 days in a coma and six years in a wheelchair before taking part in the marathon in April 2003.

This year MS-UK has 109 runners running to raise money for the charity so it can continue to support anyone affected by MS. On opening day the MS-UK fundraising team saw a record number of runners attend, ready to get their numbers and excited to run on Sunday.

Reminding runners to make sure they come along and sign up, MS-UK Fundraising Manager, Jill Purcell, said: “Runners can visit the Virgin Money London Marathon Expo from Wednesday 18 April to Saturday 21 April to register for their running numbers. We’ve seen a record number of runners attend on the first day alone and are looking forward to seeing each and every one of you.

“Every year I’m brought to tears by our runner’s stories. Everyone’s reason for running is different, but the one thing they all have in common is that we are all working hard to support people with MS. I’m incredibly proud of all our runners. I’ve seen and heard how much training and hard work they have put into their preparation and I have no doubts that they’ve got this!”

HSCT the truth

Posted on: March 29 2018

On 19 March, BBC Breakfast featured a short piece on a HSCT trial with relapsing remitting multiple sclerosis (RRMS) patients taking place in Sheffield. It provoked a strong reaction from the MS community and a lot of questions, so we’ve tried to answer some of them…SJL.png

What is it and how does it work?
A variety of clinics and hospitals across the world, including Sheffield and London are trialling and practicing HSCT treatment.

This particular Hematopoietic stem cell transplantation (HSCT) trial, which has been taking place in Sheffield, America, Sweden and Brazil, involves the patient having stem cells extracted from their bone marrow. Next they are given chemotherapy treatment, which strips back their immune system to almost that of a baby and then the healthy stem cells are transplanted back into their body.

The trial was set up to test the efficacy of HSCT treatment versus FDA approved MS drugs, such as interferon, glatiramer acetate, mitoxantrone, natalizumab, fingolimod, or tecfidera.

The findings
Just over 100 patients have taken part in the trial, in hospitals in Chicago, Sheffield, Uppsala in Sweden and Sao Paulo in Brazil.

Scientists conducting the research claim they have made a significant breakthrough with this type of treatment in patients with highly active relapsing remitting multiple sclerosis (RRMS).

Patients received either HSCT or drug treatment. After one year, only one relapse occurred among the stem cell group compared with 39 in the drug group.

After an average follow-up of three years, the transplants had failed in three out of 52 patients (6%), compared with 30 of 50 (60%) in the control group.

Those in the transplant group experienced a reduction in disability, whereas symptoms worsened in the drug group.

The interim results were released at the annual meeting of the European Society for Bone and Marrow Transplantation in Lisbon.

Click here to read the study’s abstract - Hematopoietic Stem Cell Therapy for Patients With Inflammatory Multiple Sclerosis Failing Alternate Approved Therapy: A Randomized Study.

What is the inclusion criteria?
Participants have to be aged 18-55 and have a clinically defined MS diagnosis using the revised McDonald criteria.

Their Expanded Disability Status Score (EDSS) should be 2.0 to 6.0.

The must show inflammatory disease despite treatment with standard disease modifying therapy, including at least six months of interferon or copaxone.

Inflammatory disease is defined based on both MRI (gadolinium enhancing lesions) and clinical activity (acute relapses *treated with IV or oral high dose corticosteroids and prescribed by a neurologist). Minimum disease activity required for failure is defined as: a) two or more *steroid treated clinical relapses with documented new objective signs on neurological examination documented by a neurologist within the year prior to the study, or b) one *steroid treated clinical relapse within the year prior to study and evidence on MRI of active inflammation (i.e., gadolinium enhancement) within the last 12 months on an occasion separate from the clinical relapse (three months before or after the clinical relapse).

A steroid treated relapse will include a relapse that was severe enough to justify treatment but due to patient intolerance of steroids, or a history of non-response to steroids, they were offered but not used.

More information about inclusion and exclusion criteria can be found here.

Can I get on the trial?

Unfortunately you cannot. This is because although the trial is still active they are not recruiting.

Will it really be available on the NHS within a few months?
Dr Susan Kohlhaas, director of research at the MS Society, said the stem cell transplant HSCT "will soon be recognised as an established treatment in England”, but will it?
While this is a phase III trial testing the efficacy of the HSCT, which will be incredibly significant when it comes to gaining licensing approval, the treatment has only been formally assessed for use in the NHS within clinical trials.

There will also be a few more hoops to jump through, such as gaining approval from NICE (The National Institute for Health and Care Excellence). Although NICE does now have a fast track criteria, which enables certain drugs and treatments with the right evidence to pass through the system much quicker than we have seen in the past. Cost will almost definitely be a deciding factor. HSCT comes with a price tag of £30,000, but there are already some approved DMTs with a similar costing available to patients, so this could help justify the expenditure, especially if the treatment can halt the MS for a long period of time. We should also be mindful that a higher price point can often lead to drugs and treatments being allocated to minorities with strict criteria, rather than being rolled out for everyone.

When does the trial end?
The trial is still ongoing and its estimated end date is December 2018.

Is it really a “game changer”?
Well, it’s a great step forward for people with RRMS and it does mean there is a potential highly-successful treatment that could halt MS in its tracks on the horizon.
However, HSCT treatment in secondary and primary progressive patients doesn’t tend to be as effective and you tend to see less improvement in disability because the nerve damage by this point has become permanent.

There are still a number of questions we do not have the answer to, such as how long does the treatment last?

But maybe the biggest questions of all is if MS is genetic, the person will still have the same gene and what’s to stop the gene being triggered again and the MS returning if we do not know the true cause?

Take our annual survey today!

Posted on: March 01 2018

Hello,

vlm-e-news-image1-11.jpgEvery year we run our annual survey, asking you to tell us a bit about yourself. Last year hundreds of you took part – thank you!

We run this survey every year so that we can make sure we are always providing services that really meet the needs of people affected by multiple sclerosis, and so that we ensure we are reaching as many different people as possible that want information or support.

In the survey we’ll be asking questions all about you – from how old you are to what MS-UK services you may have used in the past. Everything is completely anonymous, and we won’t be asking you for any contact details at all.

 

button-survey-webpage.png

Thank you so much for taking part!

Best wishes,

Laura

Laura May, Marketing Manager

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