Hello, my name is Sophia, I am Seven years old and I care a lot about MS-UK - It feels cool knowing I’m MS-UK’s youngest volunteer! I started volunteering because I like helping MS-UK and I want to help people affected by multiple sclerosis (MS), I want them to feel happy and have a smile on their face. My great aunty Loraine has MS and she isn’t very well. I started by helping her, but I also want to help other people too.
I started volunteering for the MS-UK cheer-point cheerers when I went to watch my mum run the Virgin Money London Marathon in 2017. My dad and I cheered with Jenny at mile 17. I enjoyed it so much I wanted to do it again! Sometimes it gets cold standing around but I don’t make a fuss because the cheering is more important!
The best bit of volunteering is cheering everyone on at events, especially when I’m allowed to use the megaphone! I like to cheer all the runners, “Well done runners! You can do this! Do not stop! The quicker you do it, the quicker it’s over!”. I also like to look out for the purple t-shirts so I can shout MS-UK! And one time Jenny bought me chips so that might be the best thing that’s happened at an event!
I woke up on Sunday 26 April, London Marathon day, or at least it should have been! It should have been the 40th anniversary of the event. I thought about those who should have been taking part, the months of training, the moments of pain and the little victories along the way. I picked up my phone with my cup of tea and started catching up on the social media updates when I came across an MS-UK post on Facebook “The 2.6 challenge, Save the UK's charities, 1 Day to go”, and it was posted yesterday meaning launch day was today!
I dropped a quick comment to ask if it was too late to sign up and on hearing I wasn’t too late, I quickly started thinking about what I could do. I glanced around and saw the face of the famous Pokémon Pikachu painted on the side of my beer barrel from a previous event, he looked at me smugly from across the room and my challenge started to come together.
I decided that I was going to dust him off and carry him while running 26.26km, in keeping with the 2.6 challenge. I set up my JustGiving page and told the world about my challenge for MS-UK.
It got to 5pm and as I was walking to my start line I check my JustGiving page to see I had already raised over £200, which was the perfect little boost I needed before setting off!
At 5km in my elbows were already screaming at me, I had some water and a bit of flapjack and set off up the river path. I negotiate the barrel into different positions to ease the pain on the elbows. If I held it in one hand over my back it bounced on my shoulder blades, in front of me it banged on my hips, two hands behind my head and my elbows filled with pain, there just isn't a comfortable way to carry that thing! I focused on all the reasons I was doing this, I'm running this for my parents, I'm running it for those that can't, I'm running it to raise vital funds for a charity that is due to lose out. This isn't about me or my challenge, it's about them.
I reached the half way point and pulled out my phone to find messages of support, I snapped a quick photo, picked up my barrel and continued my run feeling a little more refreshed from those encouraging words. I saw a family ahead and moved well over to let them pass, but really I was grateful for a short rest. As they passed I heard, “You do realise they make smaller water bottles mate?” It made me smile and once they'd passed I carried on, getting ever closer to the end of my journey.
Three hours after I had set off, the sun had started to set in the sky and I was just 3km from the finish. I took one quick photo with the sunset and then I picking up my pace because I knew I was almost there. Literally on the home stretch now and running towards my house, barrel in front of me, I was regularly checking my watch for distance. I watched the numbers tick over… 25.90, 26.00, 26.10, 26.2... 26.26km, I was there! It was done! My hands felt bruised, my legs tired and I felt like what I had just achieved was harder than the marathon itself. I checked JustGiving again to find the total was now over £300! I was astonished at the generosity from friends, family and even social media followers.
It was then time for a bath and a cup of tea! I feel happy to know I've helped my charity in their time of need.
If you would like to make a donation to Gavin’s fundraising page visit his JustGiving page here.
We hope that you and your family are well in this difficult time.
The COVID-19 pandemic is having a catastrophic effect on UK charities leading to an estimated loss of £4 billion for the sector. Charities depend on income from fundraising events and thousands have been cancelled or postponed. For many charities, including MS-UK, the 26 April would have been the biggest fundraising day of the year thanks to the Virgin Money London Marathon, the world’s biggest one-day fundraising event which raised £66.4 million for charities in 2019.
In response, the UK’s mass participation sports event industry has come together to create The 2.6 Challenge, a nationwide fundraising campaign to Save the UK’s Charities. They are inviting the public to dream up an activity based around the numbers 2.6 or 26 and fundraise or donate to charities like us. It would be wonderful to have your support.
How can you help?
Please find more information about The 2.6 Challenge by visiting www.twopointsixchallenge.co.uk.
Thank you for continuing to support us, every penny raised will really make a difference to the lives of people living with multiple sclerosis.
Jill Purcell, MS-UK Fundraising Manager
I’m still going!
This week will be my 18th swim which means I will have swum a third of my target, whoo hoo! That will be 1,080 lengths which is 27km. Lucy in our fundraising team has just informed me that is almost 17 miles.
I swim every week at Clacton Leisure Centre and the distance from the pool to our office in Colchester is just under 15 miles. I am amazed that I have swum further than that. It puts it into perspective for me that’s for sure.
I looked up distances for even more perspective and it appears that The Strait of Dover, which is the narrowest part of the English Channel, is 33.3km / 20.7 miles. Looks as though I am almost there then!
I must admit the last few weeks have been really difficult to stay motivated. I thought the winter months would be hard but wow it’s actually become a chore to get out of the house and go. I’ve had a knee problem that made swimming quite uncomfortable. I mostly swim breaststroke so I found it was aggravating it. Last week I tried to swim more front crawl which I do not find easy at all but my knee is much improved now anyway.
So far I have raised £325 which is great. I didn’t set a target as my swim is more of a personal challenge for me, than a fundraiser. I am delighted I have raised that much though and hope I can raise a bit more too as I still have several more lengths to go.
I’ll keep you posted.
If you would like to donate to Laura's fundrasing challenge then you can do so here https://justgiving.com/fundraising/80kmfor80yrs
Mark Seabright’s challenge is to scale England’s highest mountain.
This whole thing started with a throw away comment from a colleague stating that they would like to walk the highest mountain in England, Scafell Pike, and before we knew it, we were pulling a team together and agreed that we should do the walk in aid of multiple sclerosis, as a few of us have friends who are diagnosed with the condition.
It didn’t take long for a date to be agreed and the digs booked. Then came the realisation that a few of us may need to get in some practice before the big day. The idea is to do one walk a month on varying terrain and varying lengths. This should allow each of the team to judge if they need to put in any extra training.
The first practice walk took place on the morning of the 25 January when we decided to walk up a local landmark – The Wrekin in Shropshire. Not all ten of the team could make it due to other commitments. I have realised that I am certainly not in the great condition that I thought I was, and this walk came as quiet a surprise, with its incline beginning straight out of the car park and continuing all the way to the top. We completed the walk in 1hr 12mins, with a distance of 3.23 miles and an elevation of 778ft.
The next walk is planned for the 29 February. We have decided to do a longer distance, with less of an elevation over the hills near Church Stretton and we are hopeful that the more of the team can attend this one. We are out walking around the block in our lunch breaks and doing our own little bits of exercise when possible.
Our aim is to raise £500 for MS-UK, which we believe is a very deserving charity. MS-UK have been amazing, supplying branded t-shirts, a banner, and neck tubes along with kind encouragement and support.
Want to support Mark and his friends? Head over to his JustGiving page http://www.justgiving.com/Julia-Preston3
If you would like to take on a challenge like Mark and his friends, please contact Lucy today on 01206 226500 or Lucy@ms-uk.org
John Mills tells us about his marathon motivation and how training helps him manage his MS
Here’s a quick introduction for those of you that don’t know me. My name’s John Mills and I’m going to be running the London Marathon for MS-UK this year.
I was delighted to be asked to blog on the run-up to the big race by the team at MS-UK. It’s a cause that’s very personal to me. The year 2017 was one of big changes. My wife gave birth to our beautiful daughter, I turned 30, and I was diagnosed with multiple sclerosis (MS).
In this blog, and further forthcoming ones, I will write about my journey and progress from the perspective of a runner, how my training is progressing and how my MS is in relation to this.
I tried my hardest for over a year to ignore my diagnosis. I didn’t want MS to define who I was but, with the help of MS-UK, I have now realised that I can help define the condition instead, by raising awareness and promoting the fantastic work that MS-UK do.
Having already started fundraising, raising over £2,000 in a month, and meeting 20 or so #TeamPurple runners at a recent event means that there is now no turning back for me!
I am using the Nike Running Club (NRC) app for no other reason really than I have had it since 2013 and I know what to expect when using its training plans.
Royal Parks run
To get me off to the best start possible, I signed up for the Royal Parks Half Marathon. I am so pleased that I did. More than anything, I learnt what to expect come the 26 April 2020.
Here is what I took away from the day.
1. As silly as it sounds, 16,000 people is a lot to get across the start (and finish) line and that number will be doubled come April, which feels a little overwhelming.
2. Headphones are not needed. You won’t need headphones come race day (for training they are a must, for me anyway) as there is so much more going on to keep you occupied other than a playlist; the sights of London, steel bands, marching bands and the incredible support. It’s amazing that someone who you have never met before shouting your name can put a smile on your face after just having ran 13 miles!
3. Try to at least roughly plan where your supporters will be beforehand as you will undoubtedly miss them, as I did, if you don’t know where they are. My first recommendation to anybody running the marathon for the first time is to try and get some race day experience so you know what to expect.
My wife Sasha and I ran the Colchester half marathon for the MS Society back in 2016 because someone Sasha knows had been diagnosed with MS earlier that year. We raised £1,800 and, ironically, I had no idea that just a year later I’d be diagnosed myself.
I’ve always enjoyed running, but even more so now, as for me it is a form of meditation. All I need to think about is putting one foot in front of the other – nothing else matters. You are only competing against yourself. I wanted to act now with regards to running a marathon because with MS you just don’t know if or when it will have a greater impact on your everyday life.
Running and, more specifically, training for the Royal Parks half marathon and now the London marathon is part of my daily routine. It may sound odd, but if I wasn’t running, fatigue would get the better of me and I would spend the rest of the day in bed.
Today is a perfect example of that. I find maintaining a routine is key and exercise forms a strong part of that. I’m told that there is science behind that, but I am by no means an expert. All I know is that it helps me.
Training for the marathon is a great incentive for me to get out and maintain a certain level of fitness. After a run I get a sense of accomplishment and feel like I am beating MS one day at a time.
Currently I am not on any disease-modifying therapy for my MS, but I am due to start Ocrevus which works perfectly around training as it’s a six-monthly infusion. I take it as a sign that I am supposed to be running this marathon.
To sponsor John, visit his JustGiving page https://www.justgiving.com/fundraising/john-mills-msmyselfandi
As soon as I found out I had a place on #TeamPurple in the Virgin Money London Marathon 2020, I started telling everyone, and I mean everyone!
Setting up a JustGiving page makes sharing your fundraising story so easy. As soon as I had mine set up, I shared the link with friends, family, work colleagues, clients and suppliers at work, even the WhatsApp group that all the neighbours in my building are part of.
Spreading the excitement
Being passionate and truly caring about the cause you are running for is infectious. People feel it and get behind you because of it. Don’t worry about boring people, or get wrapped up in what they think about what you’re doing, as that’s not a productive use of your time and energy.
As well as donations from friends and family, I sold teams on a football scratch card. If you search ‘football scratch card’ on Amazon you can buy a pack of 10 for £3. I sold each team for £10, with £200 to go to the winner and £200 for MS-UK. I timed it to be drawn just before Christmas which I think helped get the squares sold. I’ll definitely be doing another card pre-race day.
I have also been in touch with my local community manager at Tesco to organise bag packing. I’ll be pushing for Easter weekend so that the shop will be a bit busier, and it’s not long before the race itself! I have linked up with a couple of other runners near me so that we can take this on together and have more of a presence in-store.
Running for my mum
My mum had secondary progressive multiple sclerosis. Her left leg was worst affected, making walking a daily struggle.
She would often fall in public and be left humiliated and, of course, in pain.
In September 2013, she was admitted to hospital for an unrelated skin infection. On discharge she was largely bed bound as her MS became increasingly aggressive, spurred on by a weakened immune system. A combination of all of the above led to her suffering a pulmonary embolism and passing away on 26/09/13. I don’t need to tell anyone how hard losing a parent is. I am completely and utterly lost without my mum and, even six years on, it’s as rubbish as it was then!
I was too young, selfish and naïve to take control of the situation for mum. I want to run the London 2020 Marathon in memory of her and to raise funds for MS UK to be able to help others with MS because of this. MS is misunderstood, it affects everyone differently and is completely unpredictable. I want to play my part in changing this.
My top tips
If you’re training for a big run, get started on your fundraising as soon as you can so you can smash it out of the park early and focus on training
Talk to everyone about it. It will connect you with people in a way you would never have imagined.
Use social media. I’m documenting my training on Instagram (@healthylivinglisa_). It’s an amazing tool to get chatting to other runners and widen your network even further.
Get yourself into the Facebook group and connect with other MS-UK runners. There are also a few London Marathon Facebook groups with thousands of people to chat to and get tips from.
Not everyone has this opportunity, certainly not those that are badly affected with MS, so it’s important to recognise how much of a privilege we all have to be part of #TeamPurple and what an honour it is to spread awareness and take this challenge on.
Wow, I have been dedicated to my swim challenge for 10 weeks already, which has gone quick. That equals 600 lengths, which means I have swum 15,000m. Phew, that makes me feel quite exhausted thinking about it. Of my 80km target, I have now swum 15k.
The hardest part now we are in the midst of winter is leaving my nice warm house to go out in the dark cold evenings. I am trying to get to the pool a bit earlier in the evening to help with that. I haven’t missed a week and once I am there it’s become quite easy to get in the pool and churn out the lengths.
One week I wasn’t that well and didn’t manage the distance. I made up for it the following week though by going twice. I am so determined! I can get bored and distracted very easily so I feel proud of myself for sticking to it. For some reason, this feels different to anything else I’ve ever done and the reason I’m doing it is by far the biggest factor in keeping me going.
One week I did really struggle to get into any kind of flow and I couldn’t focus my mind no matter how hard I tried. Every length was tough and I was really frustrated. I kept going but it was a very slow swim. I put it behind me and realised it was likely because I’d had a busy weekend, (and possibly a few too many drinks with friends!). It made me realise the importance of looking after my body if I want to achieve the distance.
My Dad was a very determined person, with everything he did in his life. He didn’t let anything get in his way, including his multiple sclerosis (MS). I remind myself of this at various points when I’m swimming. If he could be that determined then surely I must have a bit of that in me too! It is him that drives me forward. This challenge has made me feel closer to him than I have felt for some time. Maybe as I am allowing myself the headspace each week rather than constantly being lost in the busyness that life brings.
As we approach our tenth Christmas without him, we will remember with smiles and celebrate the memories. Merry Christmas Dad!
If you would like to donate to Laura's fundraising please visit her Just Giving page. Thank you!
Chris Rayner turned his life around in his mid-30s and competed beyond his wildest dreams
Watching athletics with my Dad when Seb Coe, Steve Ovett and Steve Cram flew the flag for our country is one of my earliest sporting memories. However, if you had told me back in 1983 that I would one day pull on my country’s colours in competition, I would have found that hard to believe. Skip forward to October 2019 and I found myself proudly slipping into my England vest ahead of the Yorkshire Marathon!
During my early 30s, as is often the case, I’d put on a bit of weight and didn’t really exercise. I was stuck all day behind the wheel of a car as a sales rep, and my eating habits weren’t the best.
The big change happened when my marriage failed. I began jogging to try and do something positive. It’s well known that running can really boost mental health, and I was feeling a bit lonely. A friend suggested I go along with her to an event organised by Chorlton Runners. I became a regular.
I was adamant I would never enter a race, but one night, after several post-run beers, I was persuaded to enter the 2013 Leeds Abbey Dash 10k and, during the same beer session, declared I’d be able to do it in under 40 minutes. I didn’t even have a running watch back then so decided I’d better train hard, and crossed the finish line in 39 minutes 22 seconds. I was hooked!
The excitement of Leeds was short lived, however. A few days later I was in an awful car accident near Aberdeen which saw me upside down in a field. A week later my spleen ruptured, which resulted in major abdominal surgery to save my life. I felt lucky and so thankful to be alive and was desperate to get back to running to put events behind me. Six weeks after surgery and now minus my spleen, I cautiously took part in the South Manchester parkrun and it felt great to be back.
My first marathon
The next huge event in my running story was, again, after a few beers when I was persuaded to enter the 2016 Manchester Marathon. I woke the following morning thinking I’d made a terrible mistake, but then I promised myself I would dedicate the next three months to doing every single run on the plan, come rain, sun, snow or sleet.
I stood on the start line that sunny April morning knowing that I could not have done any more and that, whatever happened in the race, I had already achieved the real value the marathon. The icing on the cake was that after a rather frantic sprint to the finish line, my watch said 2 hours, 59 minutes and 57 seconds!
After that, there was no stopping me and I competed in the prestigious Boston Marathon, then Venice, then London, and then the Chester Marathon. I managed to finish in under 2 hours 45 minutes and, a week later, I received an email to say I’d qualified to represent England Masters in the 2019 Yorkshire Marathon!
My first charity marathon
It was going to be a proud day for me pulling on an England vest in my home county with my parents watching. I decided to use the occasion to do some good and considered running for charity, something I had not done previously. My grandfather Thomas Rayner had multiple sclerosis (MS) and died before I was born. I knew my father and uncle would be very delighted if I ran to support an MS charity and I chose MS-UK because of the fabulous support they provide to people living with the illness, including friends and work colleagues. Having set up a Just Giving page, I was amazed when £1,000 was donated in just 48 hours and £1,500 in total was pledged. I am fortunate to have some very generous friends and family.
The big day
The day itself was amazing. Lining up with my England colleagues for the team photo made it suddenly seem very real, but I quickly got my race head on as I had a job to do. I had my girlfriend and friends cheering me at the start and knew my parents would be at mile 14/15. Despite having had a few issues in training was determined to give it my all.
Standing alongside my Chorlton team mate Matt in the start pen, we wished each other luck and waited for the off. The conditions were pretty good – dry, cool, but a bit windy in places. I went out hard in the early stages and waited for the wheels to fall off, but got to halfway feeling good.
The shout of “Go on England!” from my mum gave me a boost at 15 miles, but a mile later, I started cramping a bit in my left hamstring. Fortunately, I managed to get rid of the cramp but lost touch with the group I had been running in, which meant running into the wind on my own, which is hard both physically and mentally.
The marathon is a massive mental game – you have so much time out there where you need to maintain form and focus and also remain hard in the head. Fortunately, Yorkshire folk are famed for this! The last six miles are always a battle in every marathon – they often say it’s a 20 mile warm up for a six mile race. I kept thinking of the finish line, all the people who I knew would be tracking my progress, the people who had sponsored me, and I shut out the message from my body that was saying Stop!
Two miles to go and my pace had just dipped a touch between 20 and 24 miles, but I rallied myself and knew I had this race and another personal best was within my grasp. With half a mile to go, the organisers kindly put a short but sharp hill in your way, but you know when you crest it you have a 400 meter downhill run to the finish. My cheer squad was placed on that hill and I flew up it, then belted it down to the finish line as the commentator called my name over the public address. I crossed the line, arm aloft, in a new best of 2 hours, 40 minutes and 51 seconds.
It is only when you finish a marathon that you realise how much pain you are in and you go from sprinting to the line to suddenly finding it hard to walk! However, I am so lucky to be able to enjoy my sport and it serves as a great reminder that things I sometimes take for granted are not so easy for others. Whilst I am very proud of my progress from taking up running in my late 30s to running for England in my mid-40s, the amazing donations I raised for MS-UK was the something that meant the day was truly special.
This month’s Fundraiser of the Month is Mathilde Bru, who swam one mile in the 2019 Children with Cancer Swim Serpentine in September.
My mum was diagnosed with primary progressive multiple sclerosis (PPMS) around five years ago when I was 16 years old. My four younger siblings and I have witnessed first-hand the effects of this life-changing illness, and so I wanted to do something to support other people with the same illness as her.
Although there is no known cure for MS, by living with my mum I have seen that there are things that can be done to improve the quality of life of MS patients, and for this reason, I can see how crucially important MS-UK is as a charity.
To raise money to help people affected by MS, I decided to take part in the 2019 Children With Cancer Swim Serpentine one-mile swim in Hyde Park. The first time I practised swimming in the Serpentine, two swans swam up to me - I’ve always been quite scared of birds so started swimming away as fast as possible, and actually ended up swimming a full mile just trying to swim away from them! The training has definitely helped with my fear of birds, as I’ve become more used to sharing the lake with the swans (who are actually much less vicious than they are said to be!)
Raising money for MS-UK has made my swim preparations a hundred times more rewarding, and I am so glad to have signed up as part of #TeamPurple. I have received a huge amount of support and advice from both the people working at MS-UK and from the other swimmers, who have shared countless amounts of training tips and motivational support. Moreover, raising money for this charity, and sharing my fundraising page to my friends and family has been a huge source of incentive for me to train harder, as I provided updates on my practice swims. My tips for fundraising would be that others send as many emails around as possible, share on all forms of social media and annoy people enough until they donate!
Mathilde has now raised £1,827.08 for MS-UK! If you would like to donate visit www.justgiving.com/fundraising/mathilde-bru.