Hi, my name is Nicky Sawyer I am 53 years old. I became aware of multiple sclerosis (MS) when I was a carer in my community as several of my service-users had MS. Each service user was completely different and they all had different stages of MS.
In 2013, my daughter Sam was diagnosed with MS and she had been having symptoms since 2011, obviously we were all devastated! Sam had her son in 2012 and although has her difficult days, she does everything for him.
Four years ago when ‘brave the shave’ was starting to really take off for women, I decided to take the plunge and shave my head, and I raised £2,500 for the MS Society!
I’ve said on many occasions that it was time I did something to raise money for MS again, and even suggested Sam and I did a skydive, but Sam wasn’t so keen on this idea! Instead, Sam asked if I fancied doing the walk over the O2. ‘Why not?’ Was my reply, but let’s raise some money! And this time we chose to raise money for MS-UK.
So with only two and a half weeks to go, I asked my friends and the customers at work to help me raise some money. Soon enough the total started to mount up! I had been sponsored for £285.50 by the time we did the walk. However whilst doing it we were approached by a lovely lady and said she would like to donate to MS-UK, she gave me £10! So I donated £5 myself to round up the figure.
Sam still doesn’t want to do the sky-dive, but I will be next year with my son, so watch this space!
I would like to thank Lucy from MS-UK for all her support and I look forward to working with her on my skydive challenge next year, and to everyone that supported me and Sam on this journey!
If you want to do something different like Nicky and Sam did, email Lucy at MS-UK or give us a call on 01206 226500 to get some information and support along your journey!
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!
I signed up to the Etape Loch Ness cycle event last September. A close friend had decided that we would become the 'Invernairne Try Team', a team of four who would undertake challenges to test ourselves and keep fit. The initial plan was to try a triathlon, but somehow we ended up entering the Etape Loch Ness, a 65-mile cycle event that starts and finishes in Inverness, and which takes 5,600 cyclists around Loch Ness, offering spectacular views and scenery alongside some physically and mentally challenging climbs. I decided that if I was going to attempt it, I should try to raise money for a charitable cause and I chose MS-UK. Thankfully, deciding to ride for a cause kept me going to the finish line.
My mother was diagnosed with multiple sclerosis (MS) in 1973 when I was ten years old. Back then there was little in the way of help and support and life wasn’t easy for my mum or us as a family. Sadly my brother has recently been diagnosed with MS but hopefully, with advances in research, medication, therapy, and support, his experience will be a lot more positive. I also think that by fundraising it has brought awareness to the fact that my brother has the condition and recognition of the issues faced by those diagnosed with what is often a misunderstood condition.
I chose MS-UK because they support and encourage those with MS to continue to live life and challenge themselves. They also offer invaluable support through the MS-UK Helpline, MS-UK Counselling and the excellent magazine, New Pathways. I feel that if we previously had access to some of the services offered by MS-UK, life for us a family might have been a little easier.
I think the biggest challenge was the fact that neither the rest of my team or I were experienced cyclists. We were all quite fit for our respective ages but most of our training over the winter had to be indoors, as with short days and icy mornings we couldn’t really get out on the bikes until March. We also had the challenge of the five-mile hill hanging over us, and all we could do was push ourselves on indoor bikes with no idea what lay in store.
When we finally hit the road on the day, we had survived a few crashes and miscommunications, learned how to change a bike tyre, and stocked up with jelly beans to keep us going, but the furthest we had cycled was 40 miles. Thankfully the weather was kind and we all managed to complete it without any disasters. My indoor training really paid off and I am delighted to report that I finished in the middle of the pack and managed to stay on my bike up the five-mile climb. It was tough though and I was so relieved to hear the piper who welcomes riders to the top. Never has the sound of bagpipes been so welcome!
From then on it was almost all downhill, with a few nasty but shorter climbs thrown in to keep you focused. Thankfully the road home was dotted with fabulous volunteers - their encouragement was invaluable to seeing us all home.
Would I do it again? Well, I did it enjoy it and I’ve registered interest for next year. I don’t have to make my mind up until September, but it would be a shame not to tackle it again with a bit more training and experience. However, having said that, we’ve still got a triathlon to attempt and as I’m a rubbish swimmer, the next challenge may have to be in the swimming pool. To be honest, I think I’d rather tackle that hill again!
I have always felt that it is important to challenge yourself, and while I am fortunate to be fit and healthy enough to take on new challenges, I’ll continue to try new things. Hopefully, the money raised, with the help of MS-UK, will encourage those with MS to not give up, find ways to make the most of life and overcome their personal challenges.
For fundraising, I used JustGiving, mainly because it makes it easy to share your page on social media and enables you to post updates to keep your donors informed. It also deals with Gift Aid, which added another £500 to my fund. Emailing the link to my friends and family and sharing updates on Facebook was invaluable. I also feel that it is essential to thank your donors personally and I took time to thank them individually on Facebook and by email if I had their email address.
If you would like to try your hand at fundraising for MS-UK, contact Lucy on 01206 226 500, or email email@example.com.
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.
In May 2011, I was just three weeks into a new job. One afternoon, I suddenly lost vision in my left eye. After a couple of days, of my vision getting worse, I went to my GP. He immediately referred me to the Royal Gwent Hospital, Wales. After nine months of tests and examinations I was sent for an MRI scan.
When the results came in, I was informed that I was being transferred to my local neurology team. At my first appointment with neurology, I was shown my MRI Scan and told I had multiple sclerosis (MS).
My MS has progressed slowly, but I have had some minor relapses and struggled with fatigue. I've also had a slow, but increasing loss of sensation in my left leg and arm.
To combat the fatigue I took up cross-country walking because I am surrounded by mountains where I live in Wales and it occurred to me I had never explored most of them - I wanted to put that right. I spent many happy hours in the areas overlooking Caerphilly and Cardiff, learning about local history.
In summer 2018, I suffered my worse relapse to date, which lasted eight weeks and took even longer to recover from. It hit me hard and really knocked my confidence. For the first time since I had been diagnosed, I felt like I was losing the fight.
I decided to fight back from the relapse and I needed something to work towards. So I set myself the challenge to attempt my most ambitious hike to date. After receiving encouragement and support from my friends when I mentioned trying to do something, I then shared my plans with my work colleague Stina. I was braced to be told I was being stupid, but not only did she back me, but she also offered to help me plan the route and train for the attempt. My line manager Tim, who is also a keen walker, heard about the idea and also offered to help.
A few days after Christmas 2018, I was doing a Google search for MS support when I stumbled across the MS-UK website. I was impressed by how friendly it seemed, with natural photos and names of real people there to help. I liked the services they were offering on their website and decided I wanted this charity to benefit from my adventure, so I set up a JustGiving page. I spoke with the fundraising team because I wanted to make sure the money I raised would go towards sustaining the services that MS-UK provides for people with MS. I realise that not everyone is as fortunate as me. My symptoms haven't been life changing, I've had excellent medical support from my GP and MS team at The Royal Gwent, and I have an amazing group of family and friends who have stood by me.
So, on 16 March 2019 at around 8am, I will be setting off with support from Tim and Stina, to cover Bedwas, Machen, Rudry and Caerphilly Mountains in one day. The route will be just over 14.5 miles and we hope to complete it in under eight hours – wish me luck!
If you are inspired by Guy’s story and would like to support his fundraising effort, visit www.justgiving.com/fundraising/guy-cooper2 to donate. Thank you!
If you’ve been inspired to take on your own challenge, contact Lucy on 01206 226500, or email firstname.lastname@example.org.
This month, our fundraising star is Grace Catchpole who took to the stage with her university sketch group in aid of MS-UK to honour the memory of her mother (pictured above). Here's her story of show night and a special delivery that brought her to tears...
In September 2018 I lost my mother to multiple sclerosis (MS). She was first diagnosed over 20 years ago and throughout that time was an inspiration to many people. I know it’s a cliché, but I don’t think it is possible to fight harder or continue to find the joy in life in the way she did. She taught me to always make the most out of everything I did and to never give up, no matter what the obstacles, and to always keep a sense of humour about everything.
In light of this I knew I wanted to do something to support those with MS. Great sporting feats were out of the question for me, as merely the thought of doing a marathon or triathlon makes me feel ill, and I would be the first to admit I am not in the shape to even think about attempting one. Then the idea hit me. I’d recently been at a university society training day where they’d spoken to us about the idea of adopting a charity for the year. Although I am not in charge of my university drama society, I am running the sketch group. I spoke to my second in command, the president of the society, and finally the rest of the sketch group and was given the green light: our little medical school sketch group was adopting MS-UK as our charity for the year.
My family’s connection with MS-UK goes back for many years. My dad ran the London Marathon for MSRC and MS-UK numerous times, something I have always been in awe of. So, when I decided that I wanted to raise money for an MS charity, MS-UK was the first place I looked to.
From the moment I decided to make contact, I knew I’d made the right decision. I was put in touch with Lucy who phoned me and we had a long chat about what I wanted to do, and why I had chosen the charity and the cause. Knowing that I had such wonderful support from the charity helped no end throughout the organisation process, and the good luck wishes via email and the Facebook page gave me and the sketch group wonderful boosts going into our first show.
To anyone looking to fundraise for MS-UK I would recommend getting in touch with their fundraising team as soon as you can! The extra support can work wonders and it was through that initial chat with Lucy that I came up with the idea to have all of our front of house team in MS-UK t-shirts for the show, helping promote what we were raising money for!
The first chance for our group to raise money for MS-UK came with our annual sketch show in December. This is a one-night-only show aimed at other students from the medical school and has been a huge success in past years, although this is the first time it has been performed for charity. The first thing that needed to be done was to look at the numbers – how much of the proceeds from the show could we afford to give to charity and still be able to fund our activity for the rest of the year? We decided to charge £1 extra for tickets which would go to MS-UK and then fit as many collection buckets into the venue as possible and rely on the generosity of medical students.
When it came to organising the event, I was at a distinct advantage. I was running a well-established event that has been running for five years, so already knew I had an audience that was willing to turn up, but the challenge was how to get them to put money in buckets. The answer came from my genius flatmate, who runs front of house for our shows. We would offer face-painting to anyone who put some money in – this tactic meant we almost doubled the money we made from ticket sales and meant we had a fabulous looking audience!
I would also like to use this space to thank the incredible alumni of our little group. On the day of the show I received an envelope, which arrived by special delivery, with strict instructions not open it until 6pm that day. At 6pm, just after doing the pre-show thankyous to my wonderful team, I opened it to discover a wonderful letter and £70 donation to MS-UK from some of our alumni, triggering unashamed tearfulness from me and an outpouring of love from the rest of the cast. After the show was over I have also been contacted by other alumni asking where they can donate money in a show of love and support I find myself overwhelmed by.
When I was first contacted by Lucy about being fundraiser of the month she spoke about the show and also about money that had been raised in my mum’s name from other areas. Both my uncle putting together a carol singing group which raised money around Oxford and the university hockey and football clubs running a student union event for MS-UK (both clubs are headed up by friends of my sister). I cannot take credit for these fundraising efforts but there is one common denominator across them all. My mother.
It was very flattering to be nominated as fundraiser of the month, however, I don’t know if this recognition truly belongs to me. The way I see it all this fundraising was caused by one amazing woman who inspired not just me, but also those around her, to want to change something and want to improve the lives of others with the MS.
That this is one of the legacies she left behind is nothing more than any of us who knew her expected, you only have to look to the impressive amounts that were donated in her name when she died in September to see just how much she touched the lives of others. I am truly proud to have had her as my mother and feel blessed to have had her in my life. I like to think she would also be proud of me for showing I have inherited just a little bit of her organisational skills in putting together a charity event, although I did need a fantastic team behind me to help me pull it off, to all of whom I offer all my thanks. MS-UK is a fantastic charity supporting people affected by a truly challenging condition and I feel honoured that I was able to support this cause even though my contribution was small. I think what my story shows is that the memory, love and respect for one amazing person can make such a difference, and I will be forever grateful that my mother was one of those people.
The support of people like Grace means we can continue our work being here for anyone affected by multiple sclerosis. Call Lucy on 01206 226500 or email Lucy today to order a free fundraising welcome pack and start your journey!
With both of us having parents who are sufferers of multiple sclerosis (MS), we both believed it would be important to try and raise money to help them as best we can. At first, we looked at participating in a triathlon, but on second thought believed we should do something more extravagant, and so turned to the idea of a skydive. We knew this would put us both outside our comfort zones and looked forward to the challenge. We collected donations for around three months prior to the jump, both setting a target of £500, with an overall goal of £1,000.
As you can imagine, at first both of us made a lot of money but after a while the donations began to dry up. Therefore, we took to advertising our JustGiving page on social media, sending it to friends and family. We also asked around our schools for donations, which contributed significantly. Our jump took place on 03 November at Hinton Skydiving Centre in Brackley.
Family and friends came along to support which was a big confidence boost due to a high level of nerves. We had our briefing, met our tandem jumpers, and set off on the fifteen-minute journey up to 13,000 ft. The journey up was the worst part because it came into perspective just how high we were jumping from. On the way up, we took in the view of Silverstone racetrack and had one final briefing before the long fall back to ground. Alex jumped first, and Dan went second.
Both of us thoroughly enjoyed the experience and both genuinely believed it was the best of our lives. The feeling of falling is very hard to explain, but it's an amazing sensation like no other that fills you with high levels of adrenaline and excitement. We would thoroughly recommend a skydive to anyone thinking about doing one, the experience is so unique, and you will not regret it.
Overall, we are delighted to say to that both met out targets and ended with a total of £1,497. Once again, we would like to thank MS-UK for their unconditional support and we hope our money goes to a good cause.
Dan Wood and Alex Greene
‘Our sister and cousin, Nicola, 48 year old mother of three, was diagnosed with multiple sclerosis (MS) in 2017.
‘Obviously such a diagnosis came as a shock to us all. From the beginning the support she has received from MS-UK has been tremendous. It gave her a forum to discuss her fears and engage with people who also have MS. In turn, it continues to give her strength and courage and is empowering her to live her life to the fullest.
‘Through Nicola we heard about the MS-UK sponsored places at the Royal Parks Half Marathon and as runners, it was an obvious way for us to give back, do an activity that we love, make a difference...all in all, a win-win situation.
‘Out the outset, as busy people, we wanted to keep our fundraising efforts simple to achieve our target of £800.
‘We canvassed family for their suggestions on how best to raise the money and the consensus was very much in favour of fundraising activities rather than just donations. This enabled us to bring our family and friends together and the desire to have some fun along the way!
‘We agreed our two events would be a garden tea party and a quiz to make the most of the lovely summer we had this year. Both activities exceeded our expectations – you can see we raised an amazing amount on our fundraising page!
‘The key challenge for us was to ensure that our guests at both events went away feeling they had an enjoyable experience and the £10 fee was good value. Feedback from both events exceeded our expectations, with suggestions we should set up our own afternoon tea business and turn the quiz into an annual event.
‘We smashed our target and raised approximately £1,200, which enabled us to spend the latter two months focusing on training for the race.
‘Both of us came away from this experience feeling a sense of pride in achieving some personal physical targets (we both set a new personal best) and in our own small way we have made a difference.
‘So what’s next? We are delighted to be volunteer stewards for the upcoming Colchester Half Marathon and looking to engage as many family members. Maybe we will see you there!
Karen and Maxine
Sue Bowles recently completed the West Highland Way in aid of MS-UK - a gargantuan 95-mile Scottish trek from Milingavie to Fort William! Sue tells us all about the challenge in her Fundraiser of the Month blog!
I decided to do this walk for MS-UK due to the inspiring way an ex pupil of mine has dealt with her diagnosis of multiple sclerosis (MS).
Kadeena Cox was a pupil of Wetherby High School and I had the privilege to teach her PE and coach her hockey. Kadeena was a very talented PE student and went on to be captain of the school hockey team. However her main talent was her speed and she became very involved in the Leeds Athletic Club where she would go most nights to train.
Kadeena's dedication to her training paid off and she earned herself a place in the elite Olympic camp. It was then, while training, that Kadeena was diagnosed with MS.
However she decided that she would not let it get it in the way of her ambition to become an Olympic competitor and she continued with her training, earning herself a place in the GB Paralympic team in 2016 in Rio, Brazil. Not only did she compete in cycling and sprinting events but she brought home gold, silver and bronze medals. She followed this up with many more achievements in the World Championships in 2015 and 2017. Kadeena is now focused on the 2020 Paralympics, and I am sure she will be as successful as ever.
She is a great role model showing that whatever obstacles come into your life you can adapt and still achieve many of your goals. Her attitude to MS mirrors the ethos of MS-UK whereby you can cope with challenges and still live your life to the full. That is why I chose to fundraise for MS-UK and to raise awareness of MS and the support that is available.
After completing the West Highland Way, which is set in stunning countryside, I decided it should be named the West Highland Challenge! I loved the whole experienc - all the blisters, rain, wind, and glorious rainbows! Whenever I was finding it tough I kept thinking about why I was doing it and I knew it was just for the moment. If I could just help a little bit for people who have to cope with an added challenge everyday then it was nothing.
I hope in some way my story might help to inspire someone else to promote awareness of MS and support MS-UK with all the work that they do.
My name is Charlie Stebbings and, along with a 14 strong team, I cycled from London to Paris between 04 - 06 May.
Myself, Mortimer McKechnie, Paris Baker, Millie Bampfylde, Tom Sater, Alicia Hanmer, Rob Gibson, Occy Cobb, Paddy Rogers, Lucy Munday, Robin Butler and Tom Everard decided to commit to this challenge in aid of three fantastic causes - MS-UK, Cancer Research, and SUDEP Action. Along with our amazing and indispensable support drivers Jack Smail and Helen Callaghan, not to forget our two broken bone casualties Katie Barton and Minty Naylor, we made a formidable fundraising team intent on giving as much support as we could to these fantastic causes.
MS-UK has been a fantastic support to our family over the last eight years since my mother was diagnosed. The work they do for suffers and their families is integral to all those affected by multiple sclerosis (MS) and therefore it is always a privilege to fundraise for them. Having said that, the pain you experience near the top of the mountain on day two at mile 95 was accompanied by a ‘what are we doing’ moment, but that is part of the fun! We organized this challenge to test ourselves and push us so that everyone felt that sense of achievement and success.
The 300 mile trip over three days was a brilliant way to do just that, and apart from Tom Sater Cycling into the back of Lucy Munday as he was being sprayed by a very friendly Frenchman watering his plants, and my exploding tire in Paris, we made it without a hitch. The 30 degree weather was both a blessing and a hinderance, but there is no doubt it kept moral high and helped those of us often void of a tan suitably rosy.
The fundraising experience is one that we can all approach in different ways, but we liked to get people engaged with the trip and run fundraisers instead of solely distributing letters or emails etc. I think there is nothing more enjoyable and motivating than hosting an event which shows you how much support you have for the charities and how many people genuinely care for your cause. I recommend it to anyone who haven’t involved people tangibly in their fundraising to try it. It adds that extra dimension and can remind you why you are doing this often crazy challenge!
Gift aid included, we raised £20,600 and am delighted to be able to give MS-UK some of that money. I must thank my team for supporting this charity with such enthusiasm. It means a huge amount to me, my family, and hopefully everyone in this community.
On to the next one!