My wife’s grandmother, Marina Lamnisos lived with multiple sclerosis (MS) for many years before she sadly passed away in 2019. After the funeral, I decided that I wanted to raise money to help others affected by the condition and ensure they get the care they need.
I set my sights on a charity walk, but one with a difference. I recruited some friends who are all Reading FC fans and it was then that we decided, back in August 2019, that we would walk from the fulltime whistle of one match to the kick-off of a game the following Tuesday. We picked Reading’s home game against Stoke on the 14 March and their away game against Derby on the 17 March.
The walk from Reading to Derby would be roughly 120 miles in total. Initially, there were three of us who were going to complete the walk. However, one of our trios showed symptoms of illness and decided it was best not to partake. Furthermore given the current climate, unfortunately, both of the football games were cancelled. While this did dampen our spirits slightly going into the Saturday, we powered on as myself and my walking partner, Craig knew we were both raising money for good reasons.
We stayed overnight in hotels in Wallingford, Banbury and Nuneaton to complete the walk. On the first day, we walked the Thames path with the last three miles completed at dusk. Parts of the path had slightly flooded given the recent weather, which meant we got to the hotel a bit damp after six hours of walking.
The following days we left our hotels at 08:30am and arrived at the following location after dark. On route, we traipsed through some of the stunning English countryside particularly between Oxford and Banbury.
When we arrived after day three at our hotel and an advert came on for CR-UK (the charity that Craig was raising money for)* and it really hit home to us exactly why we were raising money and motivated us to complete the last leg of the journey. One particular highlight for us was on day four we stopped in a pub in Hinckley for breakfast where we were treated very kindly. The staff gave Craig an ice bucket for his feet as they could see he was struggling and a man came over to chat to us and decided after listening to our story to donate to our charities. We were extremely grateful for this act of kindness. We arrived in Derby at roughly 5pm on Tuesday 17 March, it was a shame that there was no football to watch but we were relieved to have completed the Challenge for a worthy cause!
At the time of writing, we have raised an incredible £1,506 with gift aid for our causes. We hope this money can make a real difference. Our charity page is still open until June for donations so if you’d like to donate or hear more about why we did this walk please click the link below
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
Yesterday, Sunday 01 March, 21 members of #TeamPurple took part in London’s Vitality Big Half Marathon. Runners gathered from all over the country to put themselves to the test and achieve their fundraising goals for MS-UK. Some even used this as a warm-up to the Virgin Money London Marathon, which will take place in April, and others did it just for fun!
The course started at London’s iconic Tower Hill and finished at the famous Cutty Sark. Once participants had successfully completed the half marathon they were invited to enjoy a festival put on by the event organisers. It boasted live music, street food and lots of fun for all of the family to enjoy.
Although there was the threat of storm Jorge the day turned out to be bright with blue skies and a brisk breeze, which definitely didn’t stop friends and family lining the course to cheer their loved ones on. Along the course, there was live music, including choirs and bands playing from different venues creating an amazing atmosphere.
Our cheer point in Rotherhithe was manged by our wonderful volunteers who shouted loud and proud for #TeamPurple. A big thank you to all of you, we just couldn’t deliver our #TeamPurple spirit without your brilliant support!
Those who have been fundraising for the event have so far raised £2,050 which is the equivalent of MS-UK being able to provide 41 counselling sessions to those affected by multiple sclerosis, so you really are making a difference. Thank you all for your amazing efforts!
We would also like to say a special thank you to Jonathan Dadds for his fantastic photography.
The Zebraphiles first started raising money for MS-UK in 2018 thanks to our leader at the time Grace Catchpole. Her hard work and dedication to fundraising led to her deservedly being named MS-UK’s Fundraiser of the Month in February 2019.
The Zebraphiles are a university sketch comedy group, predominantly made up of medical and dental students. We write and perform sketches, songs and videos about university life, what it’s like training to work in the NHS, and anything else that makes us laugh. Each year we run our own show, perform at university events, and compete in an annual revue against other medical school comedy groups.
This year, we knew that we wanted to continue the tradition Grace had started and use our show as an opportunity to raise money for a cause close to our hearts. I contacted Lucy to let her know what we were planning to do and was overwhelmed by the support and encouragement I received. She sent us some banners that we were able to hang around the performance hall alongside information about MS-UK. We also managed to find the t-shirts Lucy sent us last year after a small search party was dispatched into the depths of the drama society’s props cupboard. With the cast working hard in rehearsals and our head of social media promoting the show around campus, preparations were well and truly underway.
On Friday 13th December, we performed our first ever two-act show to a sell-out audience! We donated £1 from each ticket and the bar staff were proudly wearing their MS-UK t-shirts, encouraging audience members to donate any spare change into the collection buckets around the hall. It was a fantastic evening for both the cast and audience!
We were immensely proud to be able to use what we do for fun as an opportunity to raise money for such an important cause.
This month, we at MS-UK are pleased to introduce our two newest Community Champions, sisters Pauline and Christine. Having witnessed the effects that multiple sclerosis (MS) has on a person and their family, Pauline and Christine have joined forces to fundraise for MS-UK without having to go out for a run!
‘With my marathon days being over, I decided to become a Community Champion for MS-UK,’ says Christine. “My sister Pauline and I have distributed the first of our collection pots around the local area, and look forward to collecting them in a few months!’ Christine was diagnosed with MS 25 years ago but considers herself very fortunate as her symptoms are ‘very mild’. No stranger to the condition, Christine has two cousins affected by MS and both her aunt and nephew (Pauline’s son) Philip passed away due to complications with MS. ‘My biggest inspiration for wanting to help MS-UK is my nephew Philip,’ she explains ‘Philip was an amazing man who, in spite of his disabilities, was determined to be as independent as possible and live life to the full. I never ever heard him moan or complain and he always made us laugh. I saw first-hand the challenges he faced after such a diagnosis and how MS-UK could be a huge support in such times.’
Pauline has also been inspired by her son Philip’s positive outlook on life, despite his MS diagnosis. ‘Phil was truly inspiring, his sense of humour and outrageous sense of fun made him a pleasure to be around,’ she says. ‘Eventually, Phil could not do anything for himself, just move his head to work the button for his computer, but he still kept his sense of humour... In spite of his disability, he didn’t want to die. One of his carers said to me that weekend that whenever we went to Phil’s, we could be having the worst day, and we would always come out smiling. We were all very proud of Phil. ‘Near the anniversary of Phil’s death each year, we hold a coffee day to raise money for MS-UK. Three years on I decided I would like to do more to help the charity. I could not commit on a regular basis, so becoming a Community Champion fits in perfectly with our lifestyle and it is great to talk to people in our local area about MS-UK.’
If you’re considering becoming a Community Champion and becoming part of the MS-UK family, get in touch with Lucy on 01206 226500 or Lucy@MS-UK.org to find out more!
Dr James Carvell experienced a variety of symptoms that he put down to a lack of sleep or not eating well before meeting a neurologist and finally realising he has MS.
MS-UK is based in Colchester where I grew up. It’s where I spent my school years playing sport, making lifelong friends and where I met my wife! We now live in London, where I am a doctor and we’ve recently welcomed our first baby – another life changing event!
Speaking of life changing days, my MS diagnosis came on 29 July 2016. Three years later I’m pleased to say I feel a lot more in control, but I vividly remember those early days.
Before my diagnosis, work, activity and day to day life were becoming more difficult. I was experiencing a real mix of symptoms that seemed unconnected. I had blurred vision (I thought this was because I refused to wear glasses), travel sickness (my driving?), I’d trip up whilst out running (lack of sleep following a night shift?), a heavy, painful leg (was it too much running?) and urinary problems (not sure about this one!).
Something wasn’t right, but I kept putting it down to a bad day at work or the fact I hadn’t slept well or hadn’t eaten well. I excused every symptom, yet at the same time, I couldn’t ignore them.
Over those two years, I had my eyes checked by an optician, my leg checked by a physio, my heart checked by a cardiologist (my symptoms seemed to come on with exercise). I never put everything together until I met with a neurologist. After reeling off all my symptoms, everything clicked and I just knew, even before the MRI showing lesions and a lumbar puncture, which after talking with my neurologist again confirmed relapsing remitting MS.
I now have an infusion every month and yes, life has changed. But I have met some great people and sometimes its rubbish but a lot of the time it’s great and I am loving the journey! Over time it has made me realise the things that are important to me in life – my family, friends and my health.
I have reduced external stressors by going less than full time at work, my wife Lianne has been so supportive in enabling me to do this. Sport always has and always will be hugely important to me. I keep up my cycling, swimming and gym time. Running is my biggest nemesis but I won’t give up on it! I think it is so important to talk to
someone about how you are doing, whether friends, family, team mates, medical professionals, anyone!
Being diagnosed with MS makes you look back and think what did I do wrong? Was it that night I had too many drinks or that I hit my head playing rugby? I may never know. At some point, I stopped looking back and started looking at how I could help those in a similar situation to see that there are positives to be taken from MS, although it may not seem it at the time.
Making a difference
I wanted to do something to help people like me; those just diagnosed, scared of the future and worried whether they can carry on life as they knew it. I wanted to tell people that they can carry on. It makes you realise what is important to you and to focus on this.
So a year ago Lianne and I set up “Monkey Sox”. Monkey Sox is all about a monkey (with ginger hair, like me!) who lives with MS and wears Odd Sox! We design the socks to be odd to mirror how the body acts and feels different left to right for those living with MS. I experience most of my symptoms on my right side; right leg, right eye, right foot.
We started with a small number of socks, selling them to fundraise for the RideLondon 100 miles cycling event that coincided with my 2nd year of diagnosis. Now we’re selling Monkey Sox at markets, on our website and a few stores local to us in London. Monkey Sox is not-for-profit and we donate 50% net profits equally to 3 MS charities of which MS-UK is one, alongside the MS Society UK and MS Trust.
We have exciting plans for Monkey Sox to grow and donate more and more each year to our charities! Through our Sports Sox we want to encourage an active lifestyle to improve the health of those with MS or not. You may have spotted some Monkey Sox on the streets at this year’s Colchester half marathon, London Asics 10K and Prudential RideLondon cycle. We have met many fantastic MS-UK supporters this year, many of whom are wearing Monkey Sox to train, race and relax in - thank you all!
Watch this space as we’re making a #TeamPurple sock just for MS-UK too and they will be revealed soon!
MS is a life-changing diagnosis, there is no denying that. But Monkey Sox has really helped me talk about MS positively, feel supported and in control. I hope that other people feel the same when they find out about Monkey Sox. Whether you are newly diagnosed, have been living with MS for years, or are the partner or friend of someone living with MS. I know that Monkey Sox makes talking about MS easier!
I end with a huge thank you to the team and community at MS-UK. You are all fantastic, and you’ve made a big difference to me and Lianne in more ways than you know, and we know you will for years to come.
Virgin Money London Marathon runner Alison Rosenberg shares her journey
I started running later in life, my challenge just prior to my 40th birthday was to be able to run a 5km park run without stopping! I completed a ‘walk to run’ course with Chase Life UK then proceeded to regularly take part in park runs, 10KM races and eventually a half marathon.
Early on in 2019 a very close friend was hospitalised with what was a severe acute episode, an Multiple Sclerosis (MS) diagnosis followed. My friend received this diagnosis and to be honest, none of my friends fully understood what MS meant or how it affects the individual, family and friends.
So, after three years of running I had thought about maybe taking part in a marathon but had never really had the time or motivation to commit myself to the training. I attended the Virgin Money London Marathon in 2019 as a spectator and on that day, I decided that it was my time to apply! My friend has had to deal with so much and I wanted to show my love and support by raising money for MS-UK. I mean, what better motivation is there, than to run for one of my greatest friends in the iconic London Marathon!
As soon as I was offered a place to run London, I started my fundraising. Initially my head was just full of ideas! I could barely sleep with the mix of excitement and nerves all at the same time! I found it useful to sit and write all my ideas down and to talk to friends about which ideas were the most practical and realistic.
Firstly, I set up my Just Giving page followed by my London Marathon Facebook page. Facebook has been a valuable tool for me to advertise my fundraising events and update my followers with my achievements.
Fundraising has been a challenge, but enjoyable and rewarding at the same time! Here are some of the main ideas that have helped me reach my initial target
I sold every date of the year for £2 each, with a great 1st, 2nd and 3rd cash prize!
My friend has an online Body Shop products page, she supported me with making a marvellous hamper. It had around £75 worth of products and goodies, including Pizza vouchers kindly donated by Domino’s. I attended a couple of Autumn Fayres with the hamper followed by a Body Shop party hosted by a friend
I arranged three separate cake breaks at work. I was very busy making cakes, but my work, family and friends all supported me and baked cakes too! These cakes breaks to my colleagues raised £250
I emailed and telephoned many companies to do with dogs and dog walking! I was totally blown away with the generosity of both small and large companies who donated over £500 worth of products to me. I have two Labradors myself, which only added to the excitement of the wonderful prizes on offer and I was able to share this with all my fellow dog walking friends!
A local sweet shop kindly donated a sweet bouquet worth £22. The owner of the shop counted the sweets and wrote the answer in a card for me so that nobody else knew the answer!
I have emailed and telephoned several companies over the last few months, asking if they would consider donating to my London Marathon fundraiser for MS-UK. Many companies have emailed back to explain that they are unable to support me due to other charitable works, however others have supported me with wonderful donations. I have been so grateful for each one of my donations, however big or small, each one has helped me push forward with my target.
At just £106 away from my £2,000 target I received a message from a local accounting company to inform me that they would like to donate the remaining money to get me to my target. I was overwhelmed and very happy to meet with one of the Directors to collect the cheque.
Since reaching target I have continued with my fundraising ideas and have received further items from larger brand companies. I am busy planning my final event which will take place in March, a craft and products sale at our local social club. I have organised for people to come and buy a table to be able to sell their products, while I will be running a Tombola and “Name the teddy” stall.
I am the type of person that likes to feel that I can be of some help, to try to make a difference. Through my running and raising money for MS-UK I feel that I can make a difference for my friend - along with many more individuals and families.
To date, I am at the 15-mile mark with my training, this is a huge personal achievement, but I know I still have a long way to go! My running friends have all signed up to the Virgin Money London Marathon as well. All 10 of us are training together and raising money for charity. My friend Rachel is running alongside me for MS-UK and is keeping very busy with her own fundraisers! We are all excited and nervous for race day, but between us we know we will make it and in the process, raise as much money for charity as possible!
If you would like to support Alison and follow her on her journey to the Virgin Money London Marathon, you can donate to her Justgiving page below
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!