Because we can. That’s why we run…for those that can’t. Multiple sclerosis (MS) has had a great impact on both our families. Fran’s cousin has suffered very badly for over 30 years but was only diagnosed 8 years ago, and is now effectively immobile. It’s heartbreaking to see her this way. My mum was diagnosed in 2016. We are still coming to terms with her reducing mobility; as each month passes that little bit more is taken away from her. My parents sold their lovely home last summer, which they so dearly loved, and have moved into a new home much more suitable to her needs, and without stairs! My cousin, at 38, was also diagnosed at the same time. So we took the decision to do something special and to raise funds towards helping out those close to our hearts, and many others, inflicted by this horrible disease.
We always say we’d do one. And kept saying it for years and years. Now, well past our prime and in our naughty forties, the marathon word finally became reality. No more excuses; it was time to make some serious cash for an MS charity. Fran had already secretly entered both of us into the Virgin Money London Marathon 2017 ballot, and the first I knew about it was when ‘a lucky you’ package came through the post congratulating me on my place. First time of asking as well! So with my place confirmed, MS-UK kindly gave a Gold Bond place to Fran with the plan being to run together and raise money to help those with MS. We did all sorts to raise funds including charity bucket collections, bake-offs, sweep stakes and organising quiz nights. We had fantastic support from family and friends via donations to our charity page, and as we requested, many gave a donation in lieu of our birthday and Christmas presents. Our son even asked for the same - top lad!
Training was ‘interesting’ and certainly much more time consuming and hard going than we ever predicted. The MS-UK Marathon Facebook page was so useful for tips and encouragement. It was inspiring to see how others were tackling the same challenges, supporting and encouraging each other daily. It was also, oddly enough, quite comforting to see that others found it hard going too…we weren’t alone!
The Big Day
For those of you that have already run it, you will already know the crowds are just amazing; the shouts of constant support really hits you. Literally every mile is packed with people spurring you on. You certainly won’t need those motivating iPod beats that accompanied you on your training routes, and besides, you won’t be able to hear it! The buzz and the relief you get from crossing that line makes all that hard work worth it. The time doesn’t matter, it really doesn’t. Who cares? The achievement; that’s what counts! Ride that wave, and you may even find you go faster than you planned. Fran managed a brilliant ‘Good for Age Time’, which meant…
…automatic entry next year! Wouldn’t waste that now. So despite saying we’d only run one, we are now doing it together all over again in 2018, and again for this wonderful charity. However, one massive difference stands out this time round: the weather. We had it great training up to and on the day for the London marathon in 2017; this time round it has been so pants!!! But that’ll make this years that little bit more special.
Another? Best ask us after we cross that line. Personally, I fancy a sponsored pub crawl!
You can find out more and sponsor this amazing couple on their fundraising page. Good luck guys!
Most people with MS recognise the expertise of their doctors and nurses, but somehow feel that there doesn’t seem to be enough time to cover all the things that matter to them and sometimes important things get missed. A group of people with MS and healthcare professionals are working together to improve clinic visits.
The group is called MS in the 21st Century. Many countries are represented and we learn from each other. We meet up a few times a year. We work to improve MS health care by understanding each other’s priorities and modelling partnership between people with MS and health professionals.
We have recently published a paper in a scientific journal which includes authors who have MS and also authors who are health professionals. This is a ground breaking project. The authors have discussed the priorities they have in an MS clinic visit and agreed a list of unmet needs from the viewpoints of both people with MS and health professionals. We have developed the paper jointly. As well as highlighting our different perspectives, we have also made practical recommendations. Our aim is to bridge the gaps between what people with MS and health professionals expect and provide.
We hope that the publication of this paper will be a key step towards ensuring that MS care addresses the expectations, priorities and needs of people with MS. It is vital that we work together to support people with MS to be fully engaged in managing their own condition. The paper emphasises the perspective of people with MS and how essential their involvement is in high-quality MS care.
From my own work as a neuropsychologist, I am particularly concerned to increase understanding of the psychological impact of MS, including cognition, mental health and wellbeing. We need to increase awareness of how these impacts can be recognised and successfully addressed.
Birgit Bauer, another author and a person with MS says, ‘As a person with MS, I cannot overstate the significance of this publication. I am hopeful patients everywhere and their healthcare teams will recognise the need for better communication and partnership with the ultimate goal of more effective and personalised care.’
"Unmet needs, burden of treatment, and patient engagement in multiple sclerosis: a combined perspective from the MS in the 21st Century Steering Group" is published in the peer reviewed journal, Multiple Sclerosis and Related Disorders (MSARD), and is freely available online now. DOI: 10.1016/j.msard.2017.11.013
If you are a person with MS, or are close to someone who has MS, and you are interested to help Professor Dawn Langdon’s team in their work on psychological aspects of MS, please email email@example.com.
I moved to London in 2016 and I wanted to get involved with and volunteer for multiple sclerosis (MS) charities.
I was diagnosed with MS in 2013 and I wanted to do something positive. I knew the Virgin Money London Marathon was around the corner, I wanted to be involved with the event. I contacted MS-UK and they were more than happy to take me on as a volunteer, I assisted the runners to make their way to the post-race reception.
Since then I have been asked to volunteer at a couple of other events, cheering on the participants for events such as the Royal Parks Half and RideLondon.
The MS-UK team are great and very welcoming, it gives me a chance to do something positive and meet new people.
Now in 2018, I have signed up to run for them in the Virgin Money London Marathon, I was even asked to do a little talk about my marathon experiences.
I would highly recommend joining their volunteer team!
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…
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.
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?
This time last year I was getting ready for my first ‘Virtuosity in aid of MS-UK’ gig, which took place on 11 June 2017. It was a small but appreciative crowd that came along to enjoy a night of jazz at the Colchester Arts Centre, and this year I am planning on hosting a similar event, this time pulling in some blues favourites.
As a client of MS-UK, I know the good that the charity does to support people like me living with multiple sclerosis. I know the power of music to unite people and do good. I was a musician myself, so the worst effect of having MS is that I can no longer play any instruments. This is hard to accept, but I am determined to channel it into something positive and to keep my love of music alive. That’s where the idea for ‘Virtuosity’ came from.
The choice of musicians for this Virtuosity event was based on getting an international artist supported by a major local band and soloist so that the local acts would attract bums on seats for the main feature.
Geoff Achison and the Souldiggers just happened to be on tour in the UK at Easter and I know of them because of a Facebook link from Sam Kelly (the drummer of the Souldiggers). Sam is a professional session drummer and plays at West London jam sessions (when not on tour himself), where I used to go to play bass guitar when working as a software contractor there - until MS took away the control of my hands!
The genre was chosen by Geoff’s style of souly/blues/roots music. ‘It is blues Jim - but not as you may know it!’ - is a comment from Geoff’s web site which sums it up perfectly. I hope this will make it much more popular with the audience than pure jazz but still add that special touch created when playing excellent original material with such talented session musicians.
The support artists - of which there are many excellent ones in this part of the UK - were chosen from my past experience of playing blues based music around Essex. Tim Aves and Wolfpack are legends locally and the addition of the incredibly talented Martin McNeill on vocals, slide guitar and harmonica completes the line-up.
I have been overwhelmed with the support I’ve received from the local community. Colchester Arts Centre has once again hosted the event, and media students from the Colchester Institute are even coming along to record and edit the performance. I’m hoping it’s a brilliant night for everyone involved.
There are still tickets available for the gig, which is happening this Saturday 31 March...you can buy them online from the Colchester Arts Centre website. I hope to see you there!
My team mate Paul Reynolds and I decided to compete in this year’s Devizes to Westminster International Canoe Race to raise awareness and funds for two charities, one of which is MS-UK. We are team Forget Me Not! We both have friends and family living with multiple sclerosis (MS), so we have seen first-hand the challenges it can bring to someone’s life and that is why we decided to set our very own challenge. We will be paddling 125 miles in a Canadian Canoe or C2, while portaging 77 times over the Easter weekend, from Devizes in Wiltshire to Westminster Bridge in London. It seemed like the perfect challenge to help us raise money for and awareness of MS.
The Devizes to Westminster International Canoe Race has been held annually over the Easter weekend since 1948 and this year is its 70th anniversary.
The first 52 miles are along the Kennet and Avon Canal to Reading, followed by 55 miles along the River Thames to Teddington. The final 17 mile section is on the tidal portion of the Thames. The race is a severe test of skill, physical and mental stamina and planning, with the unpredictable British weather adding a further challenge.
We’ve been doing lots of training and I will say that rolling an open C2 into the freezing River Thames as part of our capsize drill, when you’re nice and warm wearing your multiple layers, does take your breath away!
Our target is to raise £10,000, so if you would like to donate to our efforts please visit our Team Forget me Not for MS-UK fundraising page.
Here at MS-UK, we are always growing, and I’m really pleased to say that this month we have welcomed four new members of staff to the team!
Jo is our new Trusts and Foundations Fundraiser. MS-UK is really lucky to receive funding from grants and foundations across the UK, and Jo is here to make sure we can secure even more funding!
Lucy is our new Community Fundraiser, and will be looking after the amazing people who take on a challenge in aid of MS-UK…this could be a bake sale or a skydive. Lucy is here to make sure every #TeamPurple fundraising experience is brilliant from start to finish!
Angela and Alice join the MS-UK Helpline team as MS Advisors. Our helpline supports thousands of people affected by multiple sclerosis every year, and Angela and Alice will be on hand to answer any MS queries.
I hope you’ll get to know them all in the coming months!
Sarah Wright, General Manager
Hi, my name is Matt. I’m 23 years old, I live in Marlborough, Wiltshire and I am working for the year as a Teaching Assistant and Sports Coach at St Francis Prep school, Pewsey, before I head back to the University of Gloucestershire in September to complete a ‘PGCE in Primary Education’.
I originally started my fundraising for MS charities back when I was just 17 years old by doing the Reading Half Marathon. Then I decided to really try all I could to make a difference to the lives of people who live with multiple sclerosis and pushed myself to get a place on behalf of MS-UK to run in the 2014 Virgin Money London Marathon.
When I found out that I was able to run for MS-UK I was absolutely overwhelmed with excitement and pride; as I knew even then what great work MS-UK did and the difference they made to those around the UK suffering with both RR and PPMS.
Although I was undeniably nervous at the task I had set myself and challenge I had ahead of me, I knew that compared to the struggle that those suffering from MS go through day-in, day-out, I now had an opportunity to do what I could to help.
The main reason that I have such a strong interest and passion for trying to help those who suffer from MS is because it is a disease that personally affected my family.
‘Ten years ago my mum, Lorraine, was diagnosed was Primary Progressive MS. However, where in the depths of such a horrible revelation it would be easy for a person to bow down to a disease and to think that their race had been run, my mum decided to stand strong and fight PPMS head on.’
My mum is a true inspiration for me and my family, and is constantly looking for a cure or new research that could help her win this fight once and for all. Whether its researching non-biased information and advice on how to deal with Primary Progressive MS; using a hyperbaric oxygen chamber to aid in recovery; or just this year making a trip over to Serbia to ‘SwissMedica Clinic’ to undergo stem cell treatment as the next step in her fight to recovery.
‘Ten years on and my mum is still fighting.’
Having seen first-hand the struggle that those suffering from PPMS go through, I am inspired every single day by my mum and strive to do whatever I can to help in her and the thousands of others in her situation to beat this disease.
‘The reason that I continue to fundraise for MS-UK is because I know first-hand the difference that their support can make to those living with MS, and whilst much progress has been made in combating the disease, there is still a way to go.’
A real highlight in my fundraising career, which showed just how generous people can be to one another, was during my third year of university. I was the University of Gloucestershire 1st XI Men’s Hockey Captain as well as the ‘Charity and Community Engagement Officer’. I decided that we could use our last league hockey match of the season as an opportunity to raise money for a cause we held dear, as well as leaving a legacy behind to future years of fundraising and charity work throughout the university.
And so I got in touch with Swansea University and pitched the idea. I was overwhelmed by the response from them and their supporters as well as other clubs at our university that came to watch the game; people who I didn’t know, who had now found this common ground with of ‘wanting to make a difference to people’s lives’. And so we managed to raises around £500 that was then split between MS-UK and Meningitis Trust Foundation on the day.
‘It really proved to me that people who different walks of life can come together a make a positive difference.’
So, what is my latest challenge? Well, I had hoped it would be the Bath Half Marathon this February…however, the weather had other ideas! It was such a shame that the event was cancelled, but I really wanted to earn the generous donations on my fundraising page, so I organised a 25k run at Marlborough Fitness and Performance Centre (MFPC), my local gym.
On 11 March I finished the run in 1hour 56mins which I was very pleased with and EVEN more pleasingly I managed to smash my target of raising £500 and so far have raised £1,198!!!!!
Thank you to every single person who has sponsored me, you have helped me make a real difference supporting MS-UK!
We just wanted to let you know about this important source of information that our MS-UK Helpline team regularly uses to support the multiple sclerosis (MS) community.
The Disability Rights Handbook is a guide to benefits and services for anyone with a disability, their families, carers and advisers. It contains a wealth of information relating to the benefits system, as well as social care services and help for carers. This guide will be relevant to many people living with MS.
Clients who use the MS-UK Helpline have let us know how valuable the information provided by our advisors is and, since a lot of that information can be found in the Disability Rights Handbook, we wanted to share it with you. If you would like to buy your own copy, you can do so on the Disability Rights UK website store.
We wanted to let you know this was available to pre-order as last year’s handbook sold out in quite quickly!
As always, though, our MS advisors are available to listen to you, talk things through with you and keep giving you as much helpful information and support as possible.
‘Doing a skydive has always been the top of my bucket list, so when I finally built up the nerve, doing it for charity really was a no brainer. Being able to have this amazing experience and raise money for a great cause…how amazing!
‘I knew straight away I wanted the money to go to a multiple sclerosis (MS) charity and after doing some research MS-UK really stood out to me.
‘My Gramps suffered with MS for a long time and my only memories of him are in a wheelchair but he always had a smile on his face. The care he received was always great so I am so pleased to be able to contribute to help other people.
‘I am so overwhelmed by how much I have raised so far and am desperate to reach £1,000 by the time it comes to my jump! I’m excited about it now but when it comes down to it I think I might have to be pushed out of the plane!!
We are really pleased to say Laura has smashed her £1,000 target, but you can still donate on her JustGiving page today!
Your donations help MS-UK support even more people affected by multiple sclerosisto really make the most of today and live life to the full. Thank you!
This year MS-UK is commemorating 25 years of supporting people affected by multiple sclerosis, and I have a fun, easy way for you to show your support and get involved!
Just add our Twibbon to your Facebook or Twitter profile picture and help us celebrate our 25th anniversary!
There are lots of other ways to support us as well, just visit our website to find out more.
Jill Purcell, Fundraising Manager
So the halls booked. That was free, one of the perks of working in a school.
Now what to do.
It seemed there have been lots of quizzes recently fundraising for various charities so I wanted to do something different. One of the suggestions was a virtual race evening.
Ok what’s that?
It’s an evening of horse racing, watched on TV, races are bet on and the the race footage is shown to reveal the race and winner.
I was given the number of a man who would run the event for a fee of £200. Is it worth the money?
Well he would come along with the technology, so we would be able to all see the races, there would be race cards on the tables and he had a app on the laptop that places your bet, prints you out a betting slip and then works out the winnings. For me this was worth every penny. So race-man booked!
Do we/don’t we need a bar?
I know my audience, they would want to be able to have a drink on a Friday night and for work colleagues it was the end of term, so we are on holiday!
OK so I would need a licence to sell alcohol, simple, just fill in a lengthy form and submit to the local council, along with the correct fee, for me this was £21.
Then Christmas happened…
Following Christmas my daughter and I set up a Facebook event page and sent out invites.
On this page we were able to do reminders and I also asked for any unwanted gifts that would be suitable as raffle prizes, they came flooding in….
People that couldn’t make it to the evening, pledged money onto my JustGiving account, which I had also put into the page.
The week leading up to our race night, I hired glasses from the local supermarket, for a deposit. There would only be a cost for any breakages.
They also agreed I could return any unsold items.
So the the day of the event I collected the glasses, bought snacks and soft drinks along with alcohol.
Tony the man running the race evening arrived in plenty of time to set up. Friends helped me to set up for the raffle and the bar, ahead of my husband and friend running the bar for the evening.
Tony asked for two or three helpers who would be willing to be the tote, my daughter, her boyfriend and a friend offered to do this, so Tony took them through what they needed to do, apparently it was really easy!
All was ready when the first of our guests walked through the door, the evening was a great success, the races got everyone involved, the raffle went really well and the bar pretty much sold out!
My friends and family had a great night, but most importantly they helped me to raise a whooping £850 profit for MS-UK! With match funding of £350 I raised £1,200 – amazing!
Just to let you that due to the bank holidays, we will be closed over Easter…
Friday 30 March
MS-UK and Josephs Court will be closed.
Saturday 31 March
Josephs Court, our wellness centre based in Essex, will be open 9am to 3pm.
Monday 02 April
MS-UK and Josephs Court will be closed.
We will reopen on Tuesday 03 April and the MS-UK Helpline will be available from 9am either via live web chat or via telephone on 0800 783 0518. If you would like information about multiple sclerosis (MS) please do visit the MS-UK website.
For those celebrating, Happy Easter!
The MS-UK team
A team in the Department of Psychology at the University of Sheffield are investigating the role of self-perceptions in adjustment to multiple sclerosis (MS).
They are inviting people to take part. Some of the topics discussed in the questionnaires include current experiences of stress, the impact of MS on various areas of life, your self-perceptions, and perceived ability to cope with the difficulties associated with MS.
The study consists of two parts; Each part should take no longer than 20 minutes to complete. After the second questionnaire, participants will be entered into a prize draw to win a £50 (or equivalent currency) Amazon voucher.
The results of the study will be written up and submitted as a doctoral thesis as part of the Clinical Psychology Doctorate (DClinPsy) at the University of Sheffield. Additionally, the study will be submitted for publication in a scientific journal. Information regarding individual participants will not be included and participants will not be identifiable from any reports or publications of the study.
The study was reviewed and approved by the University of Sheffield Research Ethics Committee. Some of the topics discussed in the questionnaire may be distressing as they ask about current and past experiences and feelings. Contact information for listening and support services will be provided at the end of the study.