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Guest blog: 'I noticed when I would tell people my Aunty had MS, not many people knew what it was...'

Posted on: June 12 2019

In this guest blog, Melissa tells us all about her reasons for taking on a fundraising challenge in aid of MS-UK...

Melissa Izzo familyHi, my name is Melissa. I first heard about multiple sclerosis (MS) ten or so years ago now, when my Aunty was diagnosed with the condition. We were all a bit shocked as not many of us had ever heard of MS or what it does to someone. My Aunty was a hard worker, she was the manager of the local JJB soccer dome as it was known then. She would bike to work every day and always had time to go have fun on a Saturday night in town. It was here where my mum and Aunty started noticing my Aunty Cathy get very wobbly after having just one drink. They would make jokes, saying, “you been drinking before you come out?” They couldn’t understand why she kept falling on the floor after only a couple of drinks, so my aunty decided she would go to the doctors. This is when they did many tests and found out she had MS. 

So for many years my Aunty has done incredibly well with her MS, she has a couple of remissions, and took poorly but she’s always stayed strong. Over the past 5/6 years things have deteriorated and she is reliant on her wheelchair and help from others. It just upset me so much to see her suffering like this. I always tell people of my Aunty because she has one witty sense of humour and anyone who knows her always has a good laugh. But what I noticed when I would tell people she had MS was that not many people knew what it was.

This is where I decided I was going to do something about that, and started looking into ways I could spread awareness and raise funds for MS-UK. It all started with the idea of doing a skydive, something I have always loved the idea of. So I signed up to do a jump for the charity, which is where I was put into contact with the lovely Lucy at MS-UK. We both discussed about doing the jump and setting my JustGiving page up, and how I can use social media to help reach people and spread the word. 

Then I started getting other ideas of how I could help, so Lucy kindly sent me out some buckets and kitty boxes. I got into contact with my local Tesco extra and we booked a date to go in and do a bucket collection. We raised £76.65, which was just incredible. I put the kitty boxes in my local shop and my aunty's pub. 

It then struck me, with having three daughters how fun would it be to do a fundraising fun day for all the family. So I have set about organising a fun day. I’ve acquired plenty of prizes to be won on the day with beauty treatments, free meals, free bottles of prosecco. Family days out, photography family shoot, cinema tickets and cakes just to name a few. I secured a venue just down the road from where I live and I started thinking what I could do on the day to make it even more fun. Photo of Melissa's aunty

I got in contact with a bouncy castle company and managed to secure a rodeo bull and bouncy castle for the day. What child doesn’t love a bouncy castle and what adult wouldn’t be able to resist having a go on the rodeo bull? I just thought what an incredible way to attract people to the fundraising event and to help raise more funds. 

The local magazine company came and interview me and published a story in May's edition. Which was fantastic news, because now people who aren’t on social media got all the info about the event. 

I’m still emailing and phoning plenty of different companies to require some amazing prizes to give out on the day, and I’m looking forward to my sky dive on 01 September 2019. 

For anyone within the Manchester area the details for the event are: Sunday 21 July 2019, 1pm-5pm. At the club house in Irlam. (Formly boysnope golf course). Adults £3pp. Children aged 1 and up £1.50pp. 

Feeling inspired?

If you would like to challenge yourself to a Skydive or would like to discuss any other fundraising ideas please contact Lucy by email or call on 01206 226500.

Guest blog: 'I feel extremely lucky and proud to be able to run the London Marathon for my aunt...'

Posted on: April 23 2019

Image of Kate, MS-UK runner, with quoteThis Sunday Kate Mitchell will be taking on the Virgin Money London Marathon - that's 26.2 miles of running - and every step of the way she'll be inspired by her Aunt, Karen. Read why she's taking on this challenge in this guest blog...

'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.

Image of raffle prize'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!'

Visit Kate's JustGiving fundraising page

Fundraiser of the month - Sue is taking on the marathon!

Posted on: April 23 2019

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As this week sees the Virgin Money London Marathon happening our Fundraiser of the Month in April is Sue Bennett. Living with multiple sclerosis herself, Sue feels she has even more of a reason to raise funds for MS-UK...

 

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.

If you would like to support Sue Bennett in her fundraising efforts for this year’s Virgin Money London Marathon, visit her JustGiving page

Guest blog: Rebecca braves the head shave and says 'now I wear the shorn look with pride'

Posted on: April 15 2019

In this guest blog Rebecca Hathaway tells us why she'll be running the Virgin Money London Marathon this month, and how by braving the head shave she's smashed through her fundraising goal in memory of her father...Photo of Rebecca Hathaway with her head shaved

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...

  • If you are going to use your place of work in your public promotions (newspaper article etc.) make sure you get permission. Some companies or business can’t or don’t like to be affiliated with specific charities
  • Make your fundraising easy, don’t over complicate it for yourself. For example if someone else can cater; can make/provide/sell items; can take some of the organising for you, let or ask them. Use your support team, the fundraising venue to help organise, or businesses to make up packages. Any perceived lost funds will be made up in the long run if you are not stressed and are having fun!

Visit Rebecca's JustGiving web page to see her amazing fundraising total!

University of Essex host the MS Olympix - and we were invited!

Posted on: April 05 2019

Hi everyone,Photo of the group at the Exergaming MS Olympix

Way back in 2016 MS-UK hosted a team from the School of Sport Rehabilitation and Exercise Sciences from the University of Essex here at our headquarters. 

The team were running a trial testing the use of an Xbox game specifically designed to support people living with multiple sclerosis (MS). Since then, they have been working hard to continue exploring possibilities in this area, and yesterday I had the privilege of being invited to the MS Olympix at the University of Essex.

The day included taking part in three different games that could be played standing up or sitting down. 

Sarah, who was first diagnosed with relapsing-remitting MS in 2007, attended the event...

‘After hearing about the day at a Josephs Court social coffee morning, it sounded really interesting. It is really good fun and some of the games – especially the ones that involve lifting my feet up – really helps my balance and coordination. It’s like playing the Wii at home but more fun!’

Sarah added, ‘the system comes from a background of rehabilitation, so I’d love to see it developed so people like me, living with MS, can use it at home’.

A big thank you to the team for inviting me to join in and we will keep everyone posted on future studies in exergaming!

Best wishes,

Laura

Laura May, Communications Manager

Guest blog: “Always dream big and chase those goals”

Posted on: March 19 2019

Mandy Bunn (low res).jpgMandy Bunn climbed Kilimanjaro and raised a huge amount of money for MS-UK

I decided I wanted to do something big for my 50th birthday in January 2019. I wanted to see how far I could push myself both mentally and physically whilst raising money for a great cause. My partner, who has multiple sclerosis, uses MS-UK’s wellness centre Josephs Court in Essex regularly. I booked to climb Mount Kilimanjaro through Discovery Adventure. Located in Tanzania and standing at 5,895 meters above sea level, Mount Kilimanjaro is the tallest freestanding mountain in the world. It has always been on my bucket list and my father inspired me to do it!

The climb would take four and a half days, plus one and a half days to descent. The steep unpredictable terrain coupled with the altitude would certainly be the challenge I was looking for and very much a change from my day job. After roping in my friend Sue to join me I began fundraising for MS-UK. It is a national charity that is close to my heart and does great work. It is dedicated to empowering people with multiple sclerosis to make the most of today, and live life to the full.

Day one

After flying from Heathrow to Nairobi and then catching an internal flight to Kilimanjaro airport, we finally arrived at our hotel ready for the start of our adventure. After meeting with the commander Helen from Discover Adventure and the other group members we set off from Machame Gate at 10am, which is already at an elevation of 1,800 metres.

At this point we were all full of enthusiasm for the next seven hours of walking which lay ahead. We set off through the rainforest, the terrain was incredibly steep and therefore we had to go very slowly.

We carried four litres of water each and every day which we were advised to drink throughout the day in order to prevent altitude sickness – as you can imagine, there were toilet breaks aplenty! With an elevation of 2,835 metres, we arrived at Machame Camp at 5pm for some hot food and an early night.

Day two

The next day we were woken at 5.30am, the temperature had dropped to -5 degrees and I found myself trying to get dressed in my sleeping bag!

We started walking and spent six hours walking up boulders – the rainforest was beginning to end, the trees had disappeared and we started to walk on a path through ferns before we arrived above the clouds at Shira Cave Camp – with an elevation of 3,750 meters above sea level.

The porters were absolute troopers in carrying our kit along with their own and endeavoured to keep our spirits high by singing local songs. Unfortunately, the first member of our group dropped out due to altitude sickness. We enjoyed another cooked meal and another early night.

Day three

We were woken up at 5.30am again after a disturbed night’s sleep – although I was sleeping, the sleep quality wasn’t good.

Sue put the group through the usual morning warm up session which was entertainment in itself, more so for the locals!

Today was going to be a big test on altitude – we were climbing up as high as 4,600 metres above sea level to Lava Tour before dropping down to 3,900 meters to sleep. The reason we climb high and sleep low is purely to adapt the change in oxygen levels.

The terrain was “Mars-like”, very rocky and unsteady under foot. I really enjoyed that day and was still feeling good, however some of the group were showing the first signs of altitude sickness and really struggling.

Day four

After being woken up at the unearthly hour of 4.45am we started off by climbing the Barraco Wall, which was huge. It took two hours to climb up it before spending the rest of the day walking up and down hills in very hot weather. We had lunch at 10.30am and arrived at Base Camp at 4pm which stands at 4,900 meters above sea level. Unfortunately that day, two other team members left the trip, one pulled out, but the other was advised by the doctor he couldn’t continue. He had high-altitude pulmonary edema which is a life-threatening condition where fluid was on his lungs, so to continue the trip would have been deadly.

Day five

After six hours of terrible sleep, we were woken at 11pm to start the summit. I was given porridge (which is more like gruel). Just as we were about to go, another team member dropped out. Head torches on we started walking in absolute darkness, uphill and very slowly.

During the seven-hour uphill walk, people were being very sick, suffering from dizziness and becoming delusional, luckily for me, the only thing that remained was the slight upset stomach which I had on day two. The lack of air was hard, and everything became a big effort and I was really struggling with the cold.

We arrived at Stella Point just as the sun rose, but we still had 45 minutes to get to Uhuru Peak which at the summit stands 5,985 metres above sea level. As we walked to the peak, we were surrounded by other zombie-like walkers – some were being carried either to the peak or back down the mountain, and people were still vomiting, but I made it!

The overall relief of making it to Uhuru Peak gave me a second wind and after some photographs, I quickly got myself back down to base camp. The downhill walk was a killer on the feet. When we got back to basecamp, we had a quick lunchbreak and then another two hour walk to Millennium Camp (just because we hadn’t walked enough that day!) for a well-deserved sleep.

I was absolutely exhausted to the point I couldn’t unzip my bag to get my sleeping bag out. Everything seemed to require so much energy, which I just didn’t have. I just fell in the tent!

More force feeding and the final Kilimanjaro sing song and dance with the 50 strong crew who had supported and looked after us all the way. It was so infectious we were all singing and dancing in our exhausted state, it so lifted the mood.

Overall, my trip was varied with huge ups and downs and lots of laughter and camaraderie. This is undoubtedly up there with my best and most rewarding challenges. I’ll always a grateful to be able to have had the experience.

So thanks Pops for planting the seed!

What’s next you might ask? Well watch this space…

Always dream big and chase those goals because you never know when you will not have the luxury to be able to do it again.

I am extremely grateful for my family’s support and the generosity of everyone who has donated. There is still time to sponsor me and if you would like to, please click here.

Thank you,

Bunny

 

Guest blog: 'I don't know what the future holds, none of us do, but I run and keep as healthy as possible...'

Posted on: March 08 2019

Photo of Jan, MS-UK runnerIn 2017, Jan Clarke Taplin was diagnosed with multiple sclerosis (MS). In this guest blog, Jan tells us about coming to terms with her diagnosis and why running has given her a new focus in life...

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!!

Jan x

Would you like to take on a challenge in aid of MS-UK?

Find out all about fundraising and becoming part of #TeamPurple on our website today!

Guest blog: ‘Raising’ funds for MS-UK!

Posted on: February 05 2019

In this guest blog, John Williams tells us all about why he has chosen to 'raise' funds for MS-UK!

My name is John Williams and I’ve been asked to write a blog because of the way I’m trying to raise a little money for MS-UK. I’ve never done anything like this before so I’ll apologise in advance if I waffle on too much.

First, a little about me.Photo of John Williams

I’m a lifelong strength athlete who was diagnosed with multiple sclerosis (MS) in the summer of 2018.

I’ve trained for and competed in strength sports for most of my life - 45 years this year (I’m 55 at the moment). My first Olympic Lifting (the type of weightlifting they have at the Olympics) competition was in November 1974 and I went on to be a National Champion by the age of 16.

At the end of 1979 I competed in my first powerlifting competition, which is much more reliant on brute strength. Powerlifting is the squat, bench press and deadlift. A change is as good as rest so I had a go - the next Olympics in 1984 seemed so far away. I had every intention of going back to weightlifting.

I went on to be a multi British, European and World Champion across four weight classes and broke several World Records in the World Drug Free Powerlifting Federation. My last World title was in Russia in 2003, after which my body needed a rest but my need for endorphins runs deep so I switched back to weightlifting instead.

In 2004 I was British Masters (over 40) champion. I followed this up with a third place at the Welsh Open and first in the Welsh Masters. The next few years saw a number of operations, some of which were to repair the damage caused by years of long heavy training sessions and one or two to upgrade internal fixation I’d had put in years before following a motorcycle accident.

I’ve always been the sort of person who loves a challenge, even more so if someone has told me I wouldn’t be able to do it, so in 2009 I started the long road to the 2013 Masters Games. However, it was not to be and in 2012 I completely ruptured my right biceps at the shoulder and either ruptured or partially ruptured all four parts of my right rotator cuff (muscles in the shoulder). As far as recovery was concerned it was by far the most difficult injury/operation I’d had.

By the summer of 2014 I was back on the powerlifting platform representing Wales in the Four Nations Championships. My first competitive outing in a long time and I managed to break three British Masters Records, one of which had stood since 2000. During this time I even entered a strongman contest, a bucket list thing. I knew I had no chance of winning, the next oldest person was just over half my age but I managed to place top 3 in one event and actually won another. I was pleased I didn’t actually come last overall.

It was at this time that I began to notice it was taking longer to recover from workouts and my muscles ached far more than they should have. At first I put this down to 40 odd years of heavy training. I was still competing once, maybe twice a year and broke all the Welsh Masters Records in two weight classes and as I write I hold several open records across two weight classes as well.

My ability to train hard and recover was slowly but surely decreasing and by the beginning of 2018 I seemed to be constantly sore and was sustaining one injury after another – time for a visit to the doctors and a string of visits to the hospital.

Photo of John WilliamsOnce I got my diagnosis of multiple sclerosis it was a bit of a relief to be honest. It could have been something far worse and at least I could still go to the gym, albeit training very differently.

I’ve always tried to put something back into the sport I’ve enjoyed for so many years, promoting contests, refereeing, coaching and I currently edit the website for the Welsh Strength Association so once I’d settled into a training routine my thoughts turned to trying to use what I could do to raise a little money for MS and the only thing I could think of was lifting weights.

So, that brings us to what I’m doing. Phase one of my goal is to total 600kg over the three lifts (powerlifting) and to set Welsh Masters Records in each lift at the Welsh Cup on 03 March 2019. At the time of writing this I’m on course to it but as you can imagine it will depend on having enough good days to make progress, I am incredibly stubborn and driven though!

I picked MS UK because it offers support and is hands on in its approach to helping - you can see where the money goes!

I’ve opened a donation page for MS-UK on Facebook

Phase two of my goal will be more difficult – my plan is to return once again to Olympic lifting and compete in the Welsh Masters in November 2019 and hopefully raise a little more money.

We wish John lots of luck with his challenge!

If you’ve been inspired by John get in touch with Lucy to order your fundraising welcome pack today! Just email Lucy or call on 01206 226500.

If you feel ready to get going you can set up a Facebook fundraiser today!

Guest blog: The things people say...

Posted on: January 16 2019

In this guest blog we hear from David, Chief Executive from Sportability, a British charity supporting people affected by paralysis to take part in sport...

'I’ve had a wonderful two months since joining Sportability. I feel that my life is beginning to start again with my MS no longer being a brick in my pocket!'

That quote came out quite naturally in a casual conversation with Mandy, at one of our sporting events. As a former journalist it resonated with me because of its utter simplicity and total authenticity. I was a professional writer and yet I could never have created, or even imagined, such a complete and vibrant description that in just a couple of word encapsulates what Mandy obviously felt as the restraining, the weighing down, effect of multiple sclerosis (MS).

Inspired by this we have recently been gathering simple profiles from various people who enjoy our events and activities. These are unscripted self-written comments, devoid of PR frippery and spin, but chock full of sincerity and an earthy originality. The results are truly revealing.

Photo of David with Trish, the Sporability patron
This is David with Trish Deykin, the patron of Sportability.

How about this as a powerful message from Roger, a 65 year old living in the Midlands. 'With MS there are two ways you can go, either switch off and wait for a cure or you can find a different way of living your life.  Like a river finding a new course.  Before my MS I was working 80 hours a week and doing very little else.  Since my diagnosis, I have travelled more, had more fantastic experiences, a lot of them with Sportability, certainly more than I ever would have had without my illness.'

Or the frank, honest, open-ness of Jen from East Anglia. 'Prior to suffering with MS, I had always been an outgoing, confident, professional individual. However, I became a very different person as my symptoms took hold, robbing me of all of this, as well as my identity. I found myself experiencing the very unfamiliar feeling of vulnerability, having a total lack of confidence and self-worth. My world became a very small place.'

But she goes on to reveal something of an MS metamorphosis. 'Then I was introduced to Sportability and wow, I haven't looked back! This enabled me to experience a variety of activities, such as gliding, quad-biking and sailing. It's a wonderful feeling to be in an environment where you feel safe, where you are accepted as you are and where people focus on what you can do, and not what you can't. I come away from a Sportability day with a big smile and feeling emotionally energized. My confidence has grown as I realise that there is an abundance of things out there that I can in fact do!'

They are only words, but how meaningful and heartfelt they are. And what insights and, dare I say it, inspiration, they evoke. It is the things that people say, like this, that make us do the things we do.

David Heard, Chief Executive of Sportability

Photo: David Heard and Trish Deykin. At the recent 2018 Sunday Times Sportswomen of the Year Awards Trish received The Helen Rollason Award for Inspiration. She is the current Triathlon European Champion, and has been for last two years. She is also a former World Champion.

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Guest Blog: Race to the King...it started with a text

Posted on: January 11 2019

In this guest blog, Carly Soffe tells us about her gruelling grapple with the Race to the King ultra-marathon!Photo of Carly and Alister at the Race to the King challenge

I came out of a meeting in mid-January and had a text message from my good friend and Tysabri buddy’s husband, Alister... ‘Are you up for this?’ he said, sending a link to the Race to the King event, a 53 mile trail ultra-marathon.

I’d been running for about 8 months and had a few 10k and a half marathon runs under my belt, including the Brighton Marathon. I thought about it, albeit briefly, and replied ‘You know what? Yes! This sounds fun, happy to do it in a day too’. There was an option to do it over two days, but that was far too sensible…

And then I kind of forgot about it. I ramped up my training for Brighton and managed it in 4hr 30m. It was tougher than I’d hoped but I didn’t stick to my race plan and went too fast too soon. Alister assured me that a marathon was far harder than anything else I’d do… I was doubtful.

I signed up for a walking event, which the organiser agreed I could run if I was fully self-sufficient. So I ran 45km of trails on my 32nd birthday. Running offroad was a real eye opener. It took far longer than I expected but was really enjoyable and, as the only runner in a walking event, I won!

Alister was following a 12-week training program, but I was struggling. With a full time job, three dogs, multiple sclerosis (MS) and awful time management skills, I wasn’t getting the miles in. Seven weeks before the ultra, Alister and I hadn’t even run together – how were we going to manage 53 miles in each other’s company? I was starting to worry. As if he read my mind, Alister invited me to join him on a 13.1 training run around town. It went well but there was work to do. Not long after that, I managed to start using the program. It meant some early mornings and late nights, but soon I was racking up 25-40 miles per week, and Alister and I were running every Sunday together, exploring the South Downs between Chichester and Eastbourne. 

At this point we discussed fundraising. We should raise some money, but who for? I volunteered that I would like to raise money for MS-UK, and Alister could join me or choose another charity if he wanted to. I explained that the MS-UK website and chat rooms had been beneficial for me post diagnosis, and I’d like to support them. He was keen to join me, and the race begun!

Both of us are fortunate to have very supportive families, friendship groups and colleagues, and our JustGiving pages started seeing a lot of visitors. Whilst my close colleagues are aware that I have MS, it’s not common knowledge, and as I’m field based, I often don’t see people for months. Whilst my email was nonspecific, my JustGiving page was honest and held nothing back, which felt liberating. The email went to the entire business, and I let out a deep breath. Within minutes my inbox was full of kind, generous and supportive messages, some from people I knew reasonably well, and others who I’d only met once. It felt amazing.

Alister and I went on to raise around £1,700 each and proudly wore our MS-UK running vests as we took on the ultra-marathon on 23 June 2018. We set off from Slindon at 8.15am and ran (yes, we were still running) across the finish line in Winchester at just gone 10.30pm. It was an amazing experience and I genuinely enjoyed every minute of it. Our time was a little slower than hoped, but we had a headtorch malfunction, and both agreed we need to coordinate our toilet stops better in future. And yes, there is a ‘future’, Alister and I have only managed a few Parkruns together since but will be tackling at least one ultra-marathon in 2019 and aspire to complete a 100 mile ultra at some point.

Feeling inspired?

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