In 2013 my lovely mother got diagnosed with multiple sclerosis (MS). When we got the news of course we were devastated, not knowing much about the condition apart from the fact it was “incurable “ through medication and put her in a lot of pain, we just all did what we could to support her but for years I have felt helpless. She decided not to tell anyone but her close friends and family of the condition she was living with...why you ask?
My mum is one of the most strong, independent, driven and successful women you will ever come across. In 1999 she was awarded the Ernst & Young trophy winning Young Entrepreneur of the Year. From 1992 - 2012 she owned a very successful business expanding world wide in over twenty countries and for years she was on the panel of the DSA and was well respected in the industry she was in. Sadly, I believe because of all of this she put pressure on herself to portray this strong business women, I think she thought people would take pity on her or think she couldn’t get the job done if she came clean that she had MS. So instead she suffered in silence, for a few years she was CEO of a large network marketing business which was an extremely high pressured job and to get her through the pain day to day she would take morphine based pills which again is something none of her colleagues knew about.
In 2017 my mother found herself heading up Europe for one of the largest essential oils company in the world doTERRA, here again she would be working 70 hour weeks, another high pressured role but this time she would be taking over 100 flights a year around Europe. Anyone that has MS will know that one of the biggest struggles is tiredness, so it won’t come as a shock to you when I tell you that she was exhausted. But this time something was different, as she was now part of this essential oil business she discovered natural medicine and in time found the perfect essential oils to support her immune system and pain relief and now to this day is morphine free.
In June 2018, even though my mum was at her healthiest, her strongest, pain free and our “happy mum”, I still felt I needed to do something to help her and others with MS and also families that have lost loved ones through MS. I took the plunge and decided to apply to run the Virgin Money London Marathon 2019 to raise money for MS-UK. They help people and families through some of the darkest times. This journey has been incredible - I have not just been able to raise over £2,000 but I have also learnt so much about myself too, I feel so proud to be a part of it all and to have run for such a good cause with an amazing charity.
Last month my mum told me that I had given her the strength to tell the world what she had been hiding for years, she told her colleagues and thousands of people who work alongside her, friends she had not seen for years that she has had MS for over 6 years. People where stunned, some sad, some happy because her story had also helped them, but most of all no one took pity on her!
So my 'WHY' is my mum, I ran for her, for the strength she has shown, for never giving up, for still pursuing her career even though at times it was nearly impossible to get out of bed let alone run a business, for now helping so many other people with MS find a natural solution that works with them, for having the strength to tell everyone that she will fight and lastly for being the best mum I could wish for!
Applications are now open for MS-UK #TeamPurple places in the Virgin Money London Marathon 2020!
On Sunday March 23, more than four thousand people took to the streets of Colchester to be part of the towns’ biggest community sporting event the year, the Colchester Half Marathon.
The event is organised by a group of volunteers from Colchester Colne Round Table who work tirelessly throughout the year to stage this fantastic event. All the proceeds from the race are shared between local charities.
This year MS-UK were lucky enough to have been chosen as the main charity beneficiary for the event. Brain injury charity Headway Essex were the other charity partners. MS-UK worked closely with the organisers and recruited a team of over 100 volunteers and 50 runners to support the event.
Taking on a half marathon is brave enough, but not enough of a challenge for MS-UK’s long term supporter Clare Thompson and her running buddy Dave, who completed the course wearing an MS-UK branded purple tyre!
It was a great day, everyone had loads of fun and the Great British weather was exceptionally kind to us too.
This week MS-UK received a very handsome donation of £48,750 from the event. Jill Purcell, MS-UK’s Fundraising Manager said 'We are delighted to receive such a fantastic sum of money raised from the event. The amount is equivalent to MS-UK being able to provide specialised supervised exercise sessions to more than 50 clients for a whole year at Josephs Court, our wellness centre in Colchester. Thank you to the Colchester Half Marathon committee, and all runners and volunteers for their generous support. It is always a great event which significantly benefits the local community too'.
Every penny raised from the Colchester Half Marathon helps MS-UK support even more people affected by multiple sclerosis (MS), by raising awareness of the condition and offering services like our helpline, MS-UK Counselling and New Pathways magazine.
Thank you so much to all involved and our amazing #TeamPurple runners!
We can't quite believe it but we have just seen another Virgin Money London Marathon take place and it was amazing to see so many #TeamPurple runners taking on the challenge in aid of MS-UK! Thank you to every single person who made the day so special.
Now we're looking to next year and the date has been announced - 26 April 2020! The ballot for the Virgin Money London Marathon is now open, so visit the website to register today! It will close this Friday at 5pm, 03 May.
Good luck everyone!
'I was inspired to run for MS-UK by my Aunt Karen who was diagnosed with relapsing remitting multiple sclerosis (RRMS) in 2012. Despite how much of a change her diagnosis has brought to her life and the daily challenges it now presents to her, I find myself in awe with how she hasn’t let it hold her back. I was drawn to MS-UK in particular due to the great services they offer to those affected, such as the helpline, counselling service and wellness centre facility. Services like these were so valuable and essential to helping my aunt, so raising money to ensure they are provided to others who need them means a lot.
'The main challenge I faced when I found out I had a charity place last June was that I had never run before and it didn’t come very naturally to me. My main support came through joining a local running group, which has really helped me through the winter training runs and longer runs recently.
'To fundraise for MS-UK I utilised my job as a Makeup Artist in order to hold a luxury beauty raffle. I was very lucky to be gifted items after asking various colleagues for contributions to the prizes. I managed to gather together enough items for three large prizes and decided to sell tickets for £5 each. I posted about the raffle on social media, as well as my local running group’s Facebook page. I sold 109 tickets and raised a total of £545. After the success and popularity of the first raffle I’m looking to hold a second one!
'Make sure to put yourself out there, whether it be on social media or in your work place. I’ve posted regular updates of my training onto Facebook and Instagram to let people know about my progression and to let them know about why I’m running for MS-UK. Also not being afraid to reach out to local businesses or friends to see if they would be willing to donate items as prizes, if you decide to do a raffle. I was really overwhelmed by people’s generosity, so it’s always worth asking!
'I feel extremely lucky and proud to be able to run the London Marathon for my aunt and to be able to raise money for MS-UK. I’ve recently completed my longest training run (20 miles), which I never could have imagined myself doing! Knowing I’m running for such a great cause has really helped to motivate and keep me going with my training, and although I’m nervous, I can’t wait for start-line of the marathon!'
I started supporting MS-UK in 2014 when my running buddy and I decided to participate in a running challenge of three marathons in three weeks, with London being the finale of the trio. Having missed out on the ballot we were given the chance of a place with MS-UK, which was a good fit because I’ve had relapsing-remitting multiple sclerosis since my late 30s. I was immediately hooked and have been fundraising for the last five years now. I’ve raised a total of £16,372.20 so far!
This year will be my fifth marathon, all of which were charity bond places with MS-UK. Each marathon has been special in its own way; two have been with my buddy Debbie Germain, one was with my husband, last year I ran with my daughter and this year I will be by myself. The trio of marathons was an epic challenge though and a very proud moment.
Without a doubt the end of the race is very special, you are treated like a superstar by the charity and they look after you as though you have just won the gold medal.
When it’s come to raising the funds for each race I’ve organised lots of different events. I have done a quiz night a few times, various raffles, I had race entries donated for me to auction, as well as a private run coaching session with Shane Benzie.
I organise a yearly Halloween and Christmas 5k night run around Greenham Common Air Base, a fantastic spectacle of lights moving around the Common in the pitch black with medals, hot soup or mulled wine at the end.
I have a Rock and Roll Bingo evening next month where you have to guess snippets of songs and cross off bingo numbers, which should be fun.
One of my more notorious fundraisers was with my buddy Debbie. We produced a Naked Runners Calendar, with 12 of our male running friends all tastefully photographed by our photographer friend, they all have appropriately placed props of course! The calendar sold for £10 and proved to be very popular.
I’d definitely encourage anyone who’s been thinking about supporting MS-UK to give them a call. They will support you just as much as you support them.
This isn’t my first rodeo in the foray of fundraising so I wasn’t too worried about meeting my target, however I live on a different continent to a lot of my family, friends and support network. I didn’t want to just ask for straight up donations and therefore wanted to come up with something fun and inventive to do which didn’t involve people having to be present to raise money.
This year is a big bucket list year for me (hence signing up for my first marathon!), and whilst discussing said list’s items over lunch with the guys at work (I work for the Fire Department) I mentioned that I would shave my head for the right cause. The guys like any good brothers laughed and said they would pay good money to see that!! Sooo, I took them to their word.
This seemed like that perfect cause I’d been looking for, I’d made my decision. I set a target of half my fundraising goal, having two pub quiz nights planned in a couple of months, and set out on social media and by email to state my ‘hair brained’ plan; stating that the quicker I reached my goal the quicker it all comes off. I also said that the highest single donor would get to do the shaving!
I thought it might take around 3 weeks. Well within 10 days I had exceeded my target and it was still rising. It was going to happen quick. I decided the best spot for it to take place was at the fire station. I contacted the local newspaper to see if they were interested in coming to witness and take some photos, which they did. The winning donation came from one of my fellow volunteer Royal Canadian Marine Search and Rescue crewmates (the Canadian version of RNLI). I had a little wobble on the day thinking “what the heck am I doing?!” but once I sat in that chair and the clippers started buzzing it felt right. The newspaper article was great and I actually smashed my complete fundraising goal and raised over £3,000!
Multiple sclerosis (MS) has affected my family personally. My father was diagnosed with MS around 35 years ago. Back then there was very little support, information or treatments available. He and my mum were handed a trifold pamphlet and told ‘good luck’. Things have changed immensely now with the support offered by organisations such as MS-UK. The knowledge about MS, its effects, the research and treatments have improved greatly in recent years. The difference it makes to those diagnosed and their families now is what drove me to raise funds for this important cause. My father passed away a few years ago, but I know he would be proud of what I am doing.
Shaving your head is a big deal. Most of us hold a lot of our identity in our hair. I thought I would have a moment after the fact where I would look in the mirror and have a bit of a cry. I can happily state though that it hasn’t happened. I look in the mirror and feel satisfaction. It is weird, I can’t stop rubbing my hand over the fuzz I have now or trying to habitually ‘tuck’ my non-existent hair behind my ears. I was a hair twiddler so it’s not surprising; And I chuckle to myself when my hair causes a ‘Velcro’ effect with my clothes, or the couch, or my pillow, or my hats… lol. It’s surprising how much your hair keeps you warm, so I’ve got a lot of woolly hats (called toques in Canada). It’s hard to temperature regulate without the hair, so the hats come off and on, off and on. It took me a good week or so to feel confident being in public and whipping off that hat. But now I wear the shorn look with pride.
Top tips for other fundraisers...
Shelley Silas is not a runner, well that was until she realised that maybe she is…
For years I’ve told everyone never to run because it’s bad for you. I’ve encountered many runners with strapped knees and brightly coloured tape, ankle supports and sore hips all bemoaning the fact that running did this to them as if they were not in charge of their bodies. But I had no interest in running so never paid much attention.
Exactly three years ago today on March 30th, 2016 I went for a run around my local park. Bored with the gym and not wanting to be inside on a glorious spring day, my wife suggested I go for a run. Yeah, why not. I had trainers, a quick couple of laps and I’d be home. I was 56. I ran about 2 metres and stopped. I couldn’t do it. I was out of breath, my legs wouldn’t work, it was absolute torture. I couldn’t understand it. I was fit, I thought I was fit. Didn’t gym and yoga and Pilates and swimming all make me super fit? Er...no. Toned, well-stretched, with good balance, but as far as my cardio went, I was totally rubbish. I couldn’t even blame my dire attempt on my mild asthma. I stomped home filled with despair.
I don’t like not being able to do something, it’s not in my character. Facebook came to the rescue with loads of recommendations to do the NHS couch to 5k. The walk-run method has worked for thousands and it worked for me. In 9 weeks I could run 5k without stopping. I remember my first 5k race, I was overjoyed yet I couldn’t imagine running any further distance, a 10k was unimaginable. But 5k wasn't enough. I wanted more. And so it progressed. My first 10k was on Clapham Common, I was ecstatic. That year I also slipped in two triathlons. I’m still not sure how I managed to finish them. A 10-miler around Richmond Park followed, and then a half in 2018 and I loved it. The spirit of the crowd, the other runners, the super speedy and the slower among us, running for ourselves and often for charity. A 31k ultra-marathon came next in July 2018 but I wasn’t prepared and I walked a lot of it, trail running was new to me. But this was a test to see how body and mind responded. I couldn’t walk down stairs for 4 days but my mind was okay. Then I ran a dreadful 15 miler because yet again, I wasn’t prepared, I didn’t do the work and my legs knew it. Two friends helped me cross the finish line. I knew I had to be prepared next time. Looking back, I really enjoyed running and walking in the Chilterns, often alone as others were ahead and behind, time to think about everything, getting lost and then getting found. Prior to that I didn’t even know what an ultra-marathon was. It’s anything over 26.2 miles!
Some people said, what about a marathon? To which I laughed in their faces. Don’t be ridiculous, I’m never running a marathon, I have never wanted to, I have no interest in it and most important of all, I do not want to get injured.
This weekend, on Sunday April 14th, I am running the Paris marathon (because I didn’t get into London, not because I am fancy!). As I said, this is something I never dreamed of, it wasn’t on a bucket list, I didn’t watch Mo and Paula and Eliud and Mary and think, I want to do that, I want to be them. I still don’t want to be them, which is just as well because it’s never going to happen. Now I watch them in awe, the speed, the focus, the determination, the keeping on going. They are remarkable. Keeping on going is hard. But I have kept on going. I’ve been training since November 21st, four runs a week, comprising of a longer run each week and three shorter. I’ve completed all but one run due to being unwell. And I've had help.
A runner (he’s run more than 60 marathons and ultras and super-ultra 100-milers) called Michael has been with me all the way. He sorted my training schedule and has run three of the longer runs with me at my pace and has always mapped the route. He texts me weekly to find out how my legs are and how I am. I couldn’t do this without his guidance and belief – because right now, I am absolutely terrified that I won’t be able to complete it, or feel faint, or get heat stroke, or fall into the Seine, or trip over the many cobblestones, or hurt so badly I’ll have to be stretchered out, or spend all my time in the portaloos. Yes, I am scared because it has been hard, getting lost, running up hills without Kate Bush’s help and scrambling down them, fitting in training with work and life and my magnificent, supportive wife (I did remind her that this is all her fault), and my 90 year old mum and the cold and hot and fuelling properly and falling over and bouncing back and hurting and the good runs, so many good runs when it all comes together – but mostly, it’s been hard. But the satisfaction of having run outweighs everything else.
I’m running as a 60th birthday present to myself but also to raise funds for a charity, as I have been doing since I started running. This year that charity is MS-UK.
MS-UK does the most vital work, with people having to cope with multiple sclerosis (MS) on a day-to-day basis. Unlike other MS charities, MS-UK does not receive government funding or money from pharmaceutical companies, it is there to provide direct care for people having to adapt their lives to MS. My friend Jim, who is in the later stages of MS, suggested MS-UK. It's smaller than the well-known charities, but small is as vital and significant and needs our help too.
I’ve reached my target but more donations are always welcome. I have been overwhelmed by the generosity and kindness of family and friends and total strangers, especially when times are hard and the world is in chaos. I will run my best, not my fastest, I will take care while taking in the sights and smells of Paris, and I will carry every good wish lightly on my back. And I will acknowledge my immense privilege and good fortune. And I will wear my t-shirt and medal when you next see me.
For more information about MS-UK – www.ms-uk.org
If you’d like to donate to my Just Giving Page – here it is www.justgiving.com/fundraising/shelley-silas5
My cousin, Kevin was diagnosed with primary progressive multiple sclerosis (MS) in 2006. Kev was more like an older brother to me, he was someone to look up to and get into mischief with. Being two years older he always looked out for me and I got to wear his hand-me-down clothes - luckily I wasn’t much of a girly girl!
We were all shocked by his diagnosis; his initial complaint of optic neuritis hadn’t prepared us for what was to come. As a nurse I was aware of MS but more familiar with the relapse remitting form. His deterioration in health was rapid and devastating, for Kev and for all who loved him. Despite the many challenges he faced however, he never lost his sense of humour. He was truly a funny, humble and very loveable man.
Kev passed away last year, two days after his 46th birthday. I wanted to do something meaningful to help make sense of everything Kev went through, to remember him in a positive way and to help other families affected by MS. I feel very lucky to have the opportunity to run the London Marathon in his memory and I am looking forward to raising as much money as I possibly can for MS-UK.
I have two young daughters so when it came to fundraising I quickly realised that any fundraising activities were most likely going to involve them. Luckily they are involved in several clubs which have provided great links for raffles and donations.
My biggest fundraising event was a Purple Unicorn party! I had an idea to organise a children’s party and charge admission to raise money. Having organised parties for my own children on numerous occasions this felt like a safe, familiar and fun option. I contacted a party and events company, which I had used previously and had a long chat with the manager who was simply amazing! She suggested the purple unicorn theme as they already had a purple unicorn mascot (plus, who doesn’t love a purple unicorn?) she suggested using the “WeGotTickets” platform and she offered to do the party entertainment and advertising free of charge!
We set a date over the school holidays and I was able to book a function room for a discounted price as I mentioned the event was for charity. I organised a hot dog and candy floss machine, balloons for room decoration and glitter face painting which I paid for myself.
The WeGotTickets website was so easy to use, I decided on a ticket price of £10 per child with one adult going free per paying child. I advertised the event on Facebook and through my daughter’s school/nursery and the party company promoted it on Facebook, Instagram, and Twitter, plus they emailed the event details to their full client list. I managed to sell 40 tickets so raised £400 from ticket sales, the money was automatically credited to my bank account a week after the event.
In addition I organised a raffle, sold unicorn cupcakes, sweet cones and unicorn headbands. I held a guess the number of sweets in a jar competition and charged £1 donation for face painting. My final total raised was £656!
It wasn’t too difficult or time consuming to organise, I was very lucky to have such an amazing party company on board and they took a lot of the organisation and stress off my shoulders. Everyone thoroughly enjoyed the party, including me!
I am not a natural marathon runner; if my husband had to describe me in one word it would be ‘clumsy’! My journey to the Virgin Money London Marathon start line has been tough at times. I like to think Kev has been with me each step of the way, during good runs and bad runs. I know that the marathon will be an emotional day and I hope there will be plenty of tissues at the finish line!
If you would like to donate to Stephanie’s cause, visit her JustGiving page.
It was a beautiful day at the Colchester Half Marathon 2019 (24 March), the sun was shining and there was not a cloud in the sky!
MS-UK had over 60 runners pounding the streets of Colchester, including an amazing duo who both wore and ran in a tyre!
Clare Thompson and her running buddy Dave, who ran the race while carrying car tyres, really went to town on decorating their accessories in aid of MS-UK. Clare said, ‘Some years ago my wonderful sister was diagnosed with multiple sclerosis. Since then all the family have been so grateful to the work MS-UK do and we have done everything we can to help raise money for this positive and hugely supportive charity’.
It was also great to see some of our Virgin Money London Marathon runners using the event as a training session with just five weeks to go! So far #TeamPurple have raised £4,000 collectively – Go #TeamPurple!
Thank you to our 130 wonderful volunteers! These types of events just cannot happen without your commitment. You all pitched in to help and support MS-UK in any way you could. You lined the course acting as event stewards and keeping the runners safe; handed out water, bananas, medals and goody bags; directed traffic and helped people park their cars, and our volunteer photographers took some amazing shots of everyone enjoying the day. We just can’t thank you enough.
See the amazing photos from this event in our Facebook photo album today!
MS-UK is here for anyone affected by multiple sclerosis (MS), to empower them to live healthier and happier lives by improving the understanding of MS and providing support where it is needed most.
Volunteers are paramount in our success at any event MS-UK attends. If you’ve been inspired and you would like to get involved and offer your help, please get in touch with Jenny on 01206 226500.
In January 2016 I had a very frightening experience when my eyesight in one eye deteriorated quite quickly to the extent that I wasn't able to continue my work as a dentist. Over the next year and numerous tests I was no further forward and my eye made some recovery. Following a second episode with my other eye in 2017 I had further scans and a lumbar puncture which finally led to the diagnosis of RRMS or relapsing remitting multiple sclerosis.
I started to learn about treatments, being a medic I was sure I would follow the disease modifying therapies (DMTs) or daily injections of immunosuppressants, but I was encouraged to try another approach. My own GP put me in touch with a friend of hers who had been managing his own MS through diet and exercise, Alan Caldwell. Alan was a great inspiration to me and when I first met him he had just successfully completed the Virgin Money London Marathon running for MS-UK. This was exactly what I needed to hear at this time, I was in shock with an MS diagnosis and scared for the future. As we know no one can yet predict the outcome of your MS and indeed, it affects everyone differently, so to know that Alan was doing so well following the Best Bet Diet, an exercise regime and supplements meant I was going to look at all this first.
I embarked on the Best Bet Diet which I thought would be so difficult at first, particularly cutting out all dairy and gluten but I did it and haven’t looked back. My neurology team have also been supportive of my choices which again is encouraging.
During all the uncertainty with my health and before I had received an MS diagnosis I decided to start running. I joined local Five Star Active group based in Auchterarder and puffed and panted my way through 2 minute runs!! I was a complete beginner and whilst an outdoorsy type I had never run before. I remember the elation I felt when eventually running one dark Friday night we realised we had run for 12 minutes non-stop!!
From there I ran a 5k then a 10k. With news in December 2017 that I may be facing MS I decided to sign up for a Half Marathon as I was terrified if I didn't do it then it may never happen. So in May 2018 a month after my confirmed diagnosis I proudly completed Loch Leven Half in 2 hrs 17 minutes.
During the rest of 2018 I tried to keep my miles up and my fitness level as I started to come to terms with having this chronic disease. I was learning (and still am) when to push my body, and when to rest, how to fuel and which foods keep me healthy.
I had dark days and towards the end of 2018 my GP suggested I needed some counselling which I have received both privately and from MS-UK. The services MS-UK provide have been a source of great help for me so I am therefore delighted to be able to raise funds for MS-UK.
I was dubious about entering the Virgin Money London Marathon as I was concerned it may be too much for my MS but I have gone from strength to strength over the last year, I don't know what the future holds, none of us do, but I run and keep as healthy as possible and stay in the moment as much as possible.
In January several of my running club buddies were starting their training for the London Marathon, we have nine from our club heading south for the run, and I thought if I’m going to do it, it’s now or never. I sent a message to Jenny at MS-UK to find out if there was a chance my waiting list place would come up and after a very excitable phone call, she offered me a place.
If I had a doubt about the marathon it was dispelled that day with my overwhelming excitement about it and also how delighted my friends, family and running buddies were too.
The training is so far on track, we have a wonderful coach who has put a great programme together for me. She knows about my MS and together we monitor it, she insists on two days rest after my long run and I never run consecutive days. Having other running buddies makes it easier to motivate yourself and the MS-UK runners have also been great, we interact in a Facebook group and follow each other on Strava.
I have some fundraising events planned but most of my target has been met from my initial post on Facebook sharing my story and my JustGiving page. I was overwhelmed by the amount of support I received. Many people did not know what I was going through and the messages I received when I finally told the world gave me a huge boost.
I am excited for London and delighted to be part of Team Purple, see you at the finish!!
Find out all about fundraising and becoming part of #TeamPurple on our website today!