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Running for Dad in this week's marathon!

Posted on: April 16 2018

In our Fundraiser of the Month article for April, Vic Darnell tells us why she is taking on the Virgin Money London Marathon in aid of MS-UK this weekend...and why every step will be for her Dad...Photo of Vic's dad running the marathon in 1986

When I was eight years old I remember joining thousands of other people lining the streets of London, waving and cheering as streams of people ran past. At the time I didn't really understand the enormity of what those people were doing, running mile after mile, some fast, some slow, some walking but all in the aim of completing 26.2 miles. Amongst those people was my Dad. 

Fast forward a few years and my Dad had to take every ounce of energy he had and a hell of a lot of drugs to pull himself out of his wheelchair and slowly holding tight on to me, walk a few steps down the aisle of a church on my wedding day. He had been diagnosed with multiple sclerosis (MS) the year before and had his world turned upside down. From being fit and healthy, in the Police to being forced to take early retirement and a complete change of life. 

For years after I watched my Dad, I would watch the marathon on TV every year saying to myself 'one day', and since taking up running the itch has needed scratching so I decided the year I turned 40 to make my bucket list dream happen to take part in the most amazing marathon in the world.

As soon as I heard I'd been accepted to run for MS-UK I set the wheels in motion for my fundraising, looking at where I could start generating easy money with little effort whilst I planned a big fundraiser. Sponsorship started coming in as soon as I announced my challenge and as a Slimming World Consultant I have had amazing support from my members for my fundraising. I have a change pot in group and my members along with other groups in Chelmsford, Essex agreed for the next few months to have these for MS-UK. Everyone's odd 5ps, 10ps are really adding up to over £50 a month donated this way. Again members supported through donating their slimmed out of clothes which were swapped for cash and a Christmas raffle in my groups raised £284.

MS-UK charity night 3.jpgMichelle who runs Chelmer RoadRunners, a local running group which is where I first learned to run completing a couch to 5km course, sings in a local band and I approached her to sing at a charity night I was planning. Seen as she got me into the mess in the first place it seemed fitting to have her at the event! A local pub was the venue (free hire to maximise funds raised!) and with the fabulous entertainment, a raffle to be held. After hundreds of letters, emails and approaching local companies I managed to secure some great donated prizes and started selling raffle tickets to people who couldn't make the night, again to ensure I raised as much as possible. Promotion of the event went out on social media, posters up locally and great support from local papers - three have now printed my story to help further support!

The charity night went well, everyone had a fantastic time and most importantly a brilliant £1,186.06 was raised to bring my total fundraising over my initial aim of £2,500 - but I'm not stopping there - a sweepstake planned, further change pots and sponsorship will hopefully bring the total to £3,000, or more! Every penny will help MS-UK give amazing support to people like my Dad.

So now, the countdown is on till the big day itself where I shall be so proud to be running the same streets that my Dad did in 1986 (but not accepting his challenge of beating his time of 3 hours 35 minutes!)

You can sponsor Vic today online

 

Guest blog: Rosie's marathon for MS-UK!

Posted on: April 11 2018

With just over a week to go until the Virgin Money London Marathon, this guest blog is from Rosie Rollinson, who will be taking on the capital in aid of MS-UK! Read on to find out why she's running 26.2 miles all to raise vital funds so we can support people affected by multiple sclerosis (MS)...Photo of Rosie, MS-UK marathon runner

Hello!

My name is Rosie and I am in my second year of university, I am studying Politics at Leeds. I grew up in a very active family where Mum and Dad encouraged us to play team sports at school, took us on regular skiing holidays and liked us to push ourselves. Although not as athletically blessed as my brothers, I still took part and enjoyed every moment.

Upon arriving at university, hours spent doing physical activity dramatically dropped and by the end of my first year I knew I needed a challenge to get me going again. The Virgin Money London Marathon had always been on my agenda having watched my Mum train and run both London and New York for MS as a child and then more recently witnessed my older brother complete it. My Mum ran for multiple sclerosis for her brother who has lived with the disease for almost two decades…hence why MS-UK seemed an obvious choice for me! So one day as procrastination from some university work, I entered the ballot and applied to a couple of charities that were close to my heart, not really thinking anything would come of it. A couple of weeks later I received a call from Jenny who offered me a place for MS-UK, and I accepted it…and that is how I am here lining up to run the London Marathon!

Upon returning to university, I started my training plan…let me tell you nothing sorts out a hangover like a 5mile run in the cold! All was going well until the end of October when I started to get this searing pain in my foot every time I put it down, having ignored it for a while my friends dragged me to A&E and I heard every runners worse nightmare…you have a stress fracture. So I dutifully spent the next 7 weeks in a moonboot, doing very little and followed the doctor’s advice to the T as I returned to running. I am now well back on track, although I have to take it a little steadier than I would like, I have completed a half marathon in 2 and a half hours. I have three more long runs till the big day and the excitement is building with each week!

Finally, fundraising is going well! I have had some very generous donations from friends and family. My first sponsorship push was to write to all my Mum and Dad's suppliers and ask for donations, and golly were they charitable! Its been a busy couple of months juggling training, fundraising, university, eventing, working and maintaining some sort of social life but I wouldn’t have life any other way!

Thank you to everyone who has supported me and hopefully see you the other side of the finish line! 

You can sponsor Rosie today on her fundraising page!

 

Guest blog: Running for Mum

Posted on: April 05 2018

In this guest blog, Ryan Hallworth shares why he is taking on the Virgin Money London Marathon this month in aid of MS-UK...

Back in October last year I decided to apply for the running of the Virgin Money London Marathon in aid of raising money for MS-UK. It was less than a week later that I was delighted to receive the phone call that my application had been accepted.Photo of Ryan, MS-UK marathon runner

My Mum, who has had the condition for a number of years is the reason why I am running for MS-UK. 

Everybody who knows my Mum will agree, she is a completely selfless individual, always putting other people ahead of herself and has an admirable ‘just get on with it’ attitude towards her condition. By running the London Marathon for MS-UK, hopefully I am giving something back, however small it may be.

At the point of my Mum’s diagnosis, I wasn’t aware of the symptoms of multiple sclerosis nor had I heard of the condition at all, which, along with raising as much money as possible for MS-UK, is one of the main reasons I am sharing the fundraising as far and wide as possible – to raise awareness and understanding of the condition, which I know is an objective I share with the fantastic work that MS-UK undertake.

Having already raised in excess of £2,000 with over 7 weeks to go until the big day (at the time of writing this), the fundraising so far has been fantastic and has far exceeded the expectations I had. People’s kindness and generosity so far has been a huge source of motivation for those dark, freezing cold training runs which I have no doubt all the other runners for MS-UK are also enduring at the moment. 

Due to the recent weather conditions and a couple of injuries, I can’t say training has been straight forward but nonetheless, remains on-track and now approaches its latter stages with a few more long runs to go, before gradually tapering the distance down as race day approaches.

A massive thank you to everyone who has donated so far, it’s hugely appreciated by my Mum, MS-UK, my family and myself. I am hoping to keep the momentum going by reaching £2,500+ by race day so please read my story and donate if you possibly can by visiting my fundraising page.

Good luck to all the other MS-UK runners with the remainder of your training and fundraising.

Thanks for taking the time to read.

 

Guest blog: MS goes to the movies

Posted on: April 03 2018

Image saying 'MS goes to the movies'In his latest humorous guest blog Doug Ankerman discusses how movie names would be different if Hollywood was diagnosed with multiple sclerosis (MS)...

Ever wondered what would happen if Hollywood was diagnosed with multiple sclerosis?

Our favourite movies would be quite different.

Roll'em and let's see how...

"Officer And A Gentleman With Leg Spasms"

"Memory Is Gone With The Wind"

"Wizard Of Odd Sensations"

"Blade Walker"

"Band Of Bladders"

"A Shot In The Thigh"

"The Blind Side Of Optic Neuropathy"

"Absence of Myelin"

"Les Miserable"

"The Interferon Hangover"

"Schindler's Limp"

"This Is Spinal Tap"  (No Name Change Needed!)

"Snow White And The Seven Neurologists"

"Full Metal Cooling Jacket"

"A Hard Day's Night Not Sleeping"

"A Fistful of Medicare Dollars"

"Singin In The Pain"

"Close Encounters Of The MRI Kind"

"My Left Foot Drags"

"Silence Of The Limbs"

"Baclofen To The Future"

"The Social Security Network"

"Poltergait"

"When Harry Met Soli (Solumedrol)"

"Avonex-Men"

Do you have any MS films to add to the marquee?

Premiere them to MS-UK in a red-carpet comment.

Till then, we'll see you at the movies!

Doug
Doug Ankerman pokes fun at MS and other stuff at his My Odd Sock humour blog.

Guest blog: Setters & Lady’s London Pootle 2018

Posted on: March 30 2018

In our guest blog today, Setters and Lady (or Chris and Fran to normal people) tell us all about why they are taking on the Virgin Money London Marathon in aid of MS-UK...Image of Chris and Fran at 2017 marathon

Why?

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.

How?

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 DayPhoto of Chris and Fran with MS-UK fundraising bucket

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…

Again?

…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.

What next?

Another? Best ask us after we cross that line. Personally, I fancy a sponsored pub crawl!

Good luck everybody. We are all winners.

You can find out more and sponsor this amazing couple on their fundraising page. Good luck guys!

Guest blog: Working together to improve MS healthcare: including the voice of people with MS

Posted on: March 30 2018

Dawn Langdon, Professor of Neuropsychology at Royal Holloway, University of London, and Co-Chair of MS in the 21st Century reveals how you can help...

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.Photo of Dawn Langdon

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

Want to get involved?

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 d.langdon@rhul.ac.uk.

Guest blog: Being part of the cheer squad!

Posted on: March 29 2018

In this, her first guest blog, Sheena tells us why she recommends becoming a volunteer cheer squad member with MS-UK...Photo of Sheena holding marathon medal

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!

Sheena

Find out more how you could volunteer with MS-UK today!

Guest blog: In memory of Gramps

Posted on: March 13 2018

In April 2018, Laura Cassidy will be reaching the dizzy heights of 10,000 feet when she takes on a skydiving challenge to raise funds for MS-UK. In this guest blog, Laura tells us all about why this is so important to her…

grandad.jpg‘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!

Guest blog: How I organised a virtual race evening in aid of MS-UK!

Posted on: March 09 2018

In this guest blog, Liz Hawkins tells us all about how she organised a virtual race evening in aid of MS-UK, as part of her Virgin Money London Marathon fundraising…


img_52281.jpg

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!

img_51271.jpgOK 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!

Guest blog: Beast from the East

Posted on: March 05 2018

In her latest guest blog Joanne discusses the weather and multiple sclerosis (MS) and coping with the Beast from the East…


jo-pic.jpgThe Beast from the East has arrived! I’m recovering from a relapse (MS for sh&t!) where my mobility has been challenged, I’ve fallen several times (last time at the cinema whilst moving to let someone pass, think I deserve an Oscar for my performance!) and experiencing tons of fatigue (if I got paid to sleep, I’d be rich) so my writing is on the back burner.

I was inspired to write about how the weather affects those like me. It’s been on my mind. I have thought how reduced energy levels and mobility doesn’t wash with this weather, how limited I am but more importantly how I have to think differently and be more prepared.

The weather presents many challenges. If you flick on the TV, there are shots of the level of snow, schools closed, difficulty travelling, travel disruption and forecasts for how long we are to expect this harsh winter weather. And it doesn’t help with a storm on the way. Many other countries experience snow. They are prepared. Ours grinds to a halt, although in its defence, this harsh weather is the worst I’ve seen for a while. Little man loves the white stuff. So here are my tips for handling bad weather for those in my boat, or anyone really.

Prepare

You’ll probably stay in at home. For little man, I stock up on craft kits, board games, films for indoor fun ( I can recommend Peppa’s Cold Winter Day and Peanuts movie for little man and it doesn’t drive me nuts) and books. Reading to little man is a great time filler. Ask others to buy children’s magazines if you’ve not got any in. They usually have stories, colouring and sticker fun.

When travelling, I make sure I have food, drink, toilet stuff (she wee/incontinence pads, travel potty, toilet roll, baby wipes, carrier bag to put things in, gross but true!) things to entertain little man, warm clothes and a blanket. We’ve been putting a little man’s blanket on the radiator to place on him during car journeys.

Be safe

My mobility is bad and I’ve fallen a few times. The safest option is staying at home but it isn’t always viable. Slippy snow and ice isn’t great for anyone but when you have fallen and use a walking stick (doesn’t work well in snow!) this weather is super scary. I wear shoes I know that can help and am buying shoe grips.

Don’t put pressure on yourself 

It’s OK to feel like you can’t be bothered. But little man is so excited. He’s seen snow before but not on this scale.  I close my eyes and little man wakes me by shouting “kick a ball” or “go outside Mummy”. My husband says he’ll stick me on a sledge! (I’m thinking about weight restrictions!) It’s heart breaking when you have little energy to lift your bum off the sofa, let alone play in the snow. Give yourself a break, if you can. I’m saving energy for the weekend as my husband says he’ll be my chaperone. I’ve realised that asking for help is not a sign of weakness – so family and friends have had fun in the snow with little man, giving me a chance to recharge. I think they like it!

Protect your mind

Asking for help helps you to rest but there is the realisation that you can’t play in the snow like yesteryear. Emotions come to a head. Grief. Anger. Frustration. Envy. Social media has a lot to answer for that. Don’t get me wrong it’s lovely to see what others are doing on their snowy days but it’s a reminder that you have limited mobility. I’ve cried a lot over the last few days because I want to be the one to play in the snow with little man. I will go out at the weekend with my husband around. In the interim, try not to be alone, hook up with others whether it’s friends who can come to you (I organised a play date today), speaking to social media contacts ( I asked my local MS Society group for best shoe grips recommendations) and plan for brighter days ( I’m thinking of summer holidays).

Be more hygge

In the interim, snuggle down, grab a blanket, hot chocolate and biscuits may not be great for the waist line but I’m still scoffing and watch films. Be like a Dane until the bad weather goes away.

Stay safe everyone! I’d love to know your tips?

Joanne

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