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Introducing Sadie, our latest Fundraiser of the Month!

Posted on: July 13 2021

Meet Sadie. At only five years old, she's accomplished an amazing fundraising activity to support MS-UK! Here's her story... FROM Sadie Holmes.jpg

My sister, Amber age six, climbed Snowdon last year for MS-UK and I said to my Dad I think its my turn to climb a mountain this year, but I am only five. We decided to try a different mountain, so we chose Scafell Pike which is not as tall, but it is steeper. I set up my donation page, bought some new walking boots and got training. As the weekend approached, we noticed the weather looked very bad so I suggested we go a day earlier and climb on the Friday.  

We drove late Thursday and arrived at our hotel after 10pm. On the morning, the weather was lovely and we set off climbing at 10am. Before we started, my Dad stood in a big cowpat which made me laugh and him stink a bit! The climb was very steep, I had to use my hands a lot. The best part was where we had to climb across a stream and we didn’t even get a little bit wet. I had fruit pastelles to get me to the top or as I called them ‘Super boosting sweets’. It took 2.15 hours to get to the top. We turned straight round and came all the way down. In total it took 4.08 hours. The climb was very very tough and I got some bad blisters but I knew we had to finish. My dad told me how proud so many people were of my achievement (he said he wasn’t crying but his eyes had lots of water coming out of them) and I was allowed to have dessert before my dinner that evening.  

My grandad had multiple sclerosis (MS) for 22 years and had such courage. Unfortunately, he passed away in 2019 and I miss him a lot. I wanted to do something to make him proud and carry on his memory. I did it for MS-UK as they supported him and my family. They do wonderful things for people with MS. We raised over £2,000 and have made a memory for life.   

Swimming challenge – round 2!

Posted on: July 07 2021

Helpline and Information Supervisor, Laura is taking on a swimming challenge in memory of her dad. Here's her story... Laura Amiss-Smith.JPG

Well, here we go again!

I first started my swimming challenge in October 2019. I had set myself the challenge of swimming 80kms over the course of a year to mark what would have been my Dad’s 80th birthday. He lived with MS for more years than without. I also work on the MS-UK Helpline, so not only have I seen and felt the impact of MS personally, but I also hear other people’s stories each week.

My challenge came to a grinding halt in March 2020 due to Covid. I had managed to cover 60 lengths every week for 20 weeks, I was well into the swing of things and really enjoying my time in the water. I was feeling fit, and each week was becoming easier. I felt really on track to achieve the distance.

The pools closed and I could not do anything about it. The months went by and in July 2020, we marked ten years of Dad’s passing. I felt disappointed that I could not continue my swim in his memory. Being in and out of lockdown, combined with restricted pool hours, meant my challenge was temporarily on hold.

Fast forward to this year when lockdown was once again lifted, the pool reopened with more flexible opening times. I had lost my swimming mojo though and kept making excuses that life was once again too busy, or I could not log into the new online booking system!

Then something clicked and I pulled my finger out! Last week saw me enter the water for the first time in 15months. I was quite nervous, I thought there is no way I will be able to cover the distance having not swum for so long. Being back in the water was so nice and although it took me several lengths to get my mind focussed, once I got going before I knew it, I had swum 60 lengths. It felt so good!

I have booked to go tonight, and I have made a promise to myself to do my best to go every week until I have reached the final distance of 80km. So far, I have covered 31.5km of my target. That means if I swim 60 lengths each week, I have another 32 weeks to go! I would love to complete it by the end of the year if I can. I will need to go more than once a week, but I am determined to finish what I started. Dad was the most determined person I have ever known, he is always my inspiration.

To donate to my Justgiving page, please visit the page here

Runner's stories - meet Katherine

Posted on: July 01 2021

My name is Katherine and I am delighted to be given the chance to run the Virgin Money London Marathon this October for MS-UK! Katherine Hyland photo.png

I started running in my final year of university, after (drunkenly) signing up for my first half marathon. After training hard and crossing the finish line, I was adamant I would never be doing that again. Little did I know, I had caught the running bug and would go on to run a further four half marathons. Running has become my way to keep fit and healthy both physically and mentally, giving me a sense of achievement and confidence unlike anything else. With everything 2020 threw at us all, running became more important for me than ever, and the time seemed right to take on the Virgin Money London Marathon for a cause close to my heart.

I am fundraising for MS-UK as my mum lives with multiple sclerosis (MS) and it means a lot to me to be able to help support others and their families who are affected. MS by its nature is unpredictable, and as a family, we have found ways to adapt and keep smiling, and the way my mum approaches each day is an inspiration to me.

Fundraising so far has been great, putting my cause out there has kicked things off well, using my Instagram and Facebook pages to reach friends and family. Strava has been a great way to share my running progress and inspire donations, and I will continue to share my training as distances increase. Linking Strava to my JustGiving page means anyone can see the miles clocking up.

The big sporting events of this summer, the Euros and the Olympics, are great fundraising opportunities. I am currently running a sweepstake for the Euros which is great fun and a boost to my fundraising total. Hopefully, an in-person event over the summer will also be possible.

I am incredibly inspired by any runners who also live with MS, when my body protests at another training run, I remember all the people in #TeamPurple training too, and everyone my fundraising can help. I can’t wait to run alongside everyone in London and share the achievement at the finish line!

Visit Katherine's JustGiving page

Fundraiser of the Month - Keith Wood

Posted on: June 17 2021

the Bergholt Bears book two.jpg

During the first national lockdown, Keith Wood took to fundraising for MS-UK whilst keeping local residents entertained. The bears have become local legends, and this is Keith's story. 

"As the people of West Bergholt came out and went out and about for their daily exercise, the Bergholt Bears became a much-loved fixture in our landscape. Families eagerly looked forward to their daily visit to the “Bergholt Bears” to see the latest escapades and young and old seemed to love them. I soon became known as the “Bear Man of Bergholt. Please note this is spelt BEAR and not BARE! The first book shows all the different activities the Bergholt Bears got up to from 4th April to 18th June during the Lockdown 2020"

It didn’t stop there, following the huge demand for the now famous Bergholt Bears, Keith went on to publish a second book - The Bergholt Bears, Book Two!  

Bergholt Bears.jpg

You can get a copy of the second book at the usual local outlets in Colchester: Kitty Rose, Pantry61, the White Hart and Palmer and Partners. 

All the money raised by the sale of the second book will be donated to MS-UK, a charity very close to Keith’s heart as he was diagnosed with multiple sclerosis in 2012. Keith has already raised £1,800 through sales of the second book!  

The bears have now been named!  

Heathlands Primary School, the local school held a ‘Name the Bear’ competition where pupils were able to enter their chosen name for the bears in return for a small donation. The winner was pulled out of the hat at the local allotment opening and the famous Bergholt Bears have now officially been named - Eddie the Teddy and Genie the Teeny!  

BackHug ‘backs’ MS-UK 925 Challenge

Posted on: June 03 2021

Why Team BackHug are supporting MS-UK’s 925 challenge, in homage to the company’s roots. BackHug.jpg

When the MS-UK team invited us to apply for the ‘925’ challenge, it was quite simply a no-brainer.

This was the perfect opportunity to push our physical capabilities to the next level and nurture our team spirit, while contributing to a cause that we cared about.

We have a strong bond with the multiple sclerosis (MS) community, ever since our founder Chongsu’s days as a physiotherapist.

When Judy Graham, MS-UK’s New Pathways’ editor, met Chongsu in 2013, long before he founded BackHug, little did they know that eight years later a much larger BackHug team would be running 925 kilometers to raise money for MS-UK.

Judy had discovered Chongsu in a Sunday Times article that described how Alison Peebles, a Scottish actress with Primary Progressive MS, who starred in Taggart and River City, benefited from Chongsu’s treatment.

Chongsu’s manual treatment focused on releasing tension from the centre of the back. This in turn would alleviate tension and painful symptoms throughout the rest of the body.

Using his engineering skills, Chongsu went on to create a robotic device which replicated that manual technique. Around 40 units of the first version were released to people with MS in 2017, just before Christmas.

Since our article earlier this year, where we shared our reasons for partnering with MS-UK, we have gone on to deliver the latest BackHug device to customers across the UK, 85% of whom, like June who featured in this article, are living with MS.

Fast forward to today, and June Roger is benefiting greatly from using BackHug at home. Here’s what she had to say about her experience so far:

“Since starting to use the BackHug (approximately 5 times per week) I have found that my body feels much looser and less rigid, especially in my neck and shoulders, allowing me to find daily tasks, such as reaching for items, much easier. As well as that, I have found that my spasms and pain, which used to be nearly constant, have almost disappeared!”

We are grateful for this opportunity to further support the MS community both through the 925 challenge and the £50 donations we make for every BackHug subscription we receive.

What is BackHug?

BackHug is a smart back care device with 28 robotic fingers that you can operate via Bluetooth with our smartphone App. It is designed to release tension from the centre of your back and shoulder blades, alleviating aches and pains throughout the entire body.

For more information, please visit our website at www.mybackhug.com

*BackHug is classed as an electrical appliance, not as a medical device. It does not claim any medical benefits for any medical conditions.

Become a Community Champion! - Volunteers' Week 2021

Posted on: June 01 2021

Heather has been a Community Champion for MS-UK since April 2019. This is her story. Heather Swan.jpg

I initially got involved with MS-UK when I volunteered at the Virgin Money London Marathon in 2018. I found it incredibly rewarding to be part of something that made such a difference to MS-UK and, I was so inspired by what the runners achieved, that I even took on the British 10k myself in March, and raised £300! 

Since then, I have gone on to complete the Colchester Half Marathon for MS-UK (raising a further £470) and volunteered at several fundraising events. When the opportunity arose to become a MS-UK Community Champion, I jumped at the chance. 

Why I do it...

I lead a very busy life and really don’t have as much time to give to charity as I’d like, but being a Community Champion means that I can help to raise money for MS-UK in my own time, without too much of a commitment. It is completely flexible around my busy lifestyle. 

I have seven collection pots placed at various shops in my local area, and I change them every three to four months when I am passing by. I find it so rewarding when I empty the collection pots and find out how much has been raised. The pennies really do add up! It’s also lovely to speak to the different shops about MS-UK and how they support people affected by multiple sclerosis (MS). It’s surprising how many people have a connection to the condition when you get talking, and I know by having these conversations I am helping to raise awareness for the charity. 

If somebody is considering becoming a Community Champion for MS-UK, I would definitely recommend it. I always feel so valued and that I am part of the MS-UK family. I know what I am doing is making a positive difference to those affected by MS and I’m proud to be out there with my MS-UK ID badge on! 

If you would like to be part of something special and become a Community Champion like Heather, get in touch with our Fundraising team by calling 01206 226500 or emailing fundraising@ms-uk.org to find out more! 

Why I volunteer for MS-UK - Volunteers' Week

Posted on: June 01 2021

Meet Kylie, one of our newest Community Champions! Becoming a Community Champion is a great way to raise awareness of multiple sclerosis (MS) and help raise vital funds to support MS-UK. Read Kylie's story to find out what it's like to be a Community Champion. Kylie Aggio.jpg

Why I volunteered... 

I volunteered for MS-UK as I have MS myself; I’ve recently found out more about this particular charity and liked what I heard. I haven’t been involved in any of the MS charities before as I found the volunteering a bit overwhelming with working and bringing up my daughter. I’m now at a different stage in my life where life isn’t quite so hectic, so thought it would be nice to try and do something positive that benefits those with MS who might need assistance in some way.

How did I get involved?

I got involved through one of my best friends Sally-Ann. She also has MS and volunteered recently. After she told me how lovely everyone was and how it wasn’t a huge commitment to be a Community Champion that was full of pressure. My biggest trigger with my MS is when I’m under pressure or stress and that isn’t a part of being a Community Champion, so I thought why not sign up!

What I do... 

Being a Community Champion means that I speak to local businesses, shops etc. about locating a charity pot in their premises. So I can just fit this in with my usual daily life. I don’t have to make any special trips anywhere unless I want to. If I’m going to the butchers for instance, to get our dog some meat then I’d just ask if they would be kind enough to take a charity pot. If it’s a no, it doesn’t matter, at least I’ve tried and it is still raising awareness. If it’s a yes, then that’s amazing!! Quick form to fill in and then you give them the pot and check in with them a few weeks later and see how it’s going. When a pot is full I would go and collect it, exchange for a new one and pay in the money to the MS-UK’s account. Of course you can always do more if you want to in terms of fundraising. I’m hoping to do a little challenge in July to try and raise a few pounds.

How does it make me feel?

I’ve literally only been doing this for a few weeks and I’m enjoying it so much. I feel like I’m contributing and that in turn helps someone. Also, by being out and about in my MS UK T-shirt it’s raising awareness. So even if I get a few knockbacks, it’s not a disaster or demotivating because it’s still creating a conversation around the subject.

What do I get back from it?

This is really going to sound over the top but I want to shout from the rooftops how much this also benefits me. I am a real people person and love nothing better than having a conversation with someone in person, whether I know them or not. Since I have not been able to work, I don’t really get that interaction anymore and it’s something I really, really miss. Going out into the community and speaking to people about MS-UK has brought that back into my life without any added pressure that would affect my MS. It gives me purpose and the feeling that I’m achieving something. Really does give me the feel-good factor because I’m doing something positive. I am so grateful that this opportunity is available. Aside from those positives, by talking to the local community, I have found out about a local MS centre that offers all sorts of therapeutic treatments that I had no knowledge of. I’ve met a lovely lady who took a charity pot for me whose mother had MS, we had a great conversation and she’s more than willing to do whatever she can. The whole experience is very rewarding even after just a few weeks. #TeamPurple all the way!!

If becoming a Community Champion sounds like something you'd like to do, click here or contact our Fundraising team today! Call 01206 226500 or email fundraising@ms-uk.org 

Lucy and Kate's Walking Challenge

Posted on: May 25 2021

Our Fundraisers of the Month, Lucy and Kate share their story about what they're doing to support MS-UK and why lucy and kate.jpg

Remember those really warm days just over a month ago? Yes, REALLY it was very warm - it was actually so sunny and warm that on one of those beautiful days I got a little sunburn - in March! The reason for this is I was out walking for a good four and a half hours, here is why:

My sister Kate and I had decided to walk the length of Suffolk, along St Edmund Way, aiming for people to sponsor us to raise money in support of MS-UK, and (luckily) we started our first leg of the walk on the warmest day of the year so far. Our mum had MS and, although she didn't really need the support from MS-UK that much, Mum felt they were always there if she needed them. I remember her saying that she felt ‘lucky’ as she was diagnosed late in life, “I’m getting old anyway!” she would say, but she also felt MS-UK is a very valuable charity to others with MS. 

Sadly, we lost Mum to cancer four years ago. After Mum died, I walked the Essex Way, and managed to raise money for the new Cancer Centre at Colchester Hospital. I’d spoken about it with Mum as she felt she wanted to support the new centre in some way, which just goes to show that she was thinking about other people, as she so often did - she knew there was no way that the centre would be built in time for her to benefit from it. She was happy that I had a plan. Just after her birthday and just before the 4th anniversary of losing Mum, my sister Kate and I thought it was about time we did something else in her memory.

We decided on the 80 mile route running the length of Suffolk, winding its way through some beautiful, quintessentially English, and typically Suffolk villages along the way. Our first leg was from Manningtree train station on the Essex/Suffolk border to Stoke by Nayland, approximately 11 miles, so a good chunk of it to start.

As soon as we stepped onto the track just beside Manningtree station we heard a chiff-chaff in the trees beside us, the first I’ve heard this year, reminding us that Spring has arrived. At the end of the lane, just before we turned to walk through the red brick tunnel holding the train tracks above us, we saw the first of the signs for St Edmund Way, letting us know that we were on the right route. We continued to look for these markers along the route in reassurance, despite me carrying a paper copy of the Ordnance Survey Map in my backpack (and having the app on my phone)!  

Still in Essex, but only just - along on the banks of the River Stour we spotted a pair of goldfinches, bouncing along the blackthorn that was lining the path. The flash of yellow and red brightened our walk and made me think of the huge tub of bird feed, bigger than your average kitchen bin, that Mum always had filled to the brim, ensuring that she helped the birds through winter. lucy walk manningtree.jpg

Mum loved her wildflowers too, sometimes not necessarily knowing their more common names, usually referring to them with their old country folk names, I was pleased to spot a few stitchwort flowers just about opening, of course Mum called these ‘shirt buttons’. Soon the banks and hedgerows will be full of these pretty little white stars, just in time to coincide with the bluebells, which make for a beautiful combination, especially with a few red campion thrown in for measure! 

As it turns out, it has been rather cold for a while now and nature has very slowly been waking up, the bluebells are only just here and the hawthorn is still in bud. We have now completed three sections of our walk and have reached Melford Country Park. We have enjoyed an abundance of wildlife, wildflowers and other sights along the way, including a pair of red kite circling above us at Nayland, the dragon on the walls of St Mary the Virgin at Wiston, peacock, brimstone and orange tip butterflies, swallows over Sudbury Meadows, and a little mouse, busy in the bottom of the hedgerow, that we quietly watched for a few seconds but it felt like several minutes. 

Mum loved Suffolk and would have loved all the wildlife we have seen so far, she would have been able to identify so much more of it, but we are working on our knowledge and can’t wait to see what we discover next!

Check out Lucy and Kate’s fundraising page for an update on their challenge and to offer your support. If you are inspired by Lucy’s story and thinking of taking on a personal challenge, get in touch today and we can help you make it happen! Call 01206 226500 or email fundraising@ms-uk.org

Meet Kylie, one of MS-UK's Community Champions!

Posted on: May 04 2021

Hi everyone, I’m Kylie, I’m 40 years old and I’ve recently applied to become an MS-UK Community Champion. My awesome friend (that I’ve only met because we both have MS and ours paths crossed) told me all about MS-UK and the great work that they do for people with multiple sclerosis (MS) and what it meant to be a Community Champion. Kylie Aggio.jpg

It’s going to be great to help raise funds and awareness. I also love meeting and talking to new people and it’s a role that has no pressure and stress attached to it, so it is perfect!! I’m very excited to be a part of #TeamPurple!

So, just a little bit about me. I was diagnosed with MS eight years ago. I had no idea that I had anything wrong with me until in the space of a few weeks I developed many symptoms of MS. It started with tingling in my fingertips, then my toes and just spread like wildfire from there. I consider myself to be very lucky as a few visits to the doctors, I was admitted to hospital where I remained for a week while I had intravenous steroids, an MRI, and a lumbar puncture. By the time I went to hospital, I could barely walk, bounced off of walls and couldn’t even hold a knife and fork anymore.

I came out with my diagnosis of MS at the end of that week and started a disease modifying drug just a few months later once funding came through. I know that other people’s diagnosis journeys to getting a diagnosis have been a lot longer, so I am grateful that it happened in the way that it did. I’m very much 'a glass half full' kind of girl, with a decent amount of stubbornness, so I worked hard on a long recovery when I got home. I have an amazing fiancé that helped me to get quite literally get back on my feet. I have permanent symptoms that remain and symptoms that constantly come and go but I’ve just learned to live in a different way. There are always ways around things. I wouldn’t change having MS because I’ve met the most fantastic people and it’s changed me in a very positive way. It made me realise that I had to cut stress out of my life as much as possible as it is absolutely my number one trigger for a relapse. It’s taught me that actually it’s okay to say no (still working on that!), and it’s also given me back my love of arts and crafts. Although MS can be hard and challenging at times, it can also bring great gifts with it.

If you'd like to find out more about becoming one of our Community Champions, click here or contact our Fundraising team on fundraising@ms-uk.org 

Team Purple Pups

Posted on: April 15 2021

Cathy Flynn - team purple pups.jpg

Cathy and Sue took part in the Big Purple Dog Walk for MS-UK, and raised over £400 with their team of pups and walkers. Cathy shares their story and the support they were able to give each other during the challenge. 

'After the success of Run Every Day in January 2021 for MS-UK, Sue our Run Together Leader and MS-UK ambassador asked if we would like to join in The Big Purple Dog Walk, and many of the Run Together members jumped at the chance to sign up. Some team members were really struggling through the dark gloomy months, on top of trying to cope with the stress of Covid. So, we put together Team Purple Pups. Our Purple Pups are called Idris, Padfoot, Widget, Stanley, Tala, Willow, Mav, Jess, Nelly, Hunter, Max, Holly, Blitz, Ozwold, Shadow, Poppy, Willow 2, Lenny and Winnie

Team Purple Pups did us proud, they had us out every day, rain or shine! To get out in the fresh air, even for a short walk is just the best cure if you are feeling a bit down, anxious or just want to clear your head! Some of the Purple Pup’s walked miles every day, some of the slightly older dogs could only manage a few miles a day, but together as a team the Purple Pup’s covered so much mileage and completed quite a few marathons!

The MS-UK challenges throughout lockdown have helped so may of our Run Together Purple Pup owners. The challenges have got us out and about and we have met up with other Run Together members and Purple Pup’s pups and has been a life saver for many. Sue and our Run Together members have looked out for each other since lockdown last year and provided support and encouragement to anyone struggling with the Covid situation and not being able to see their loved ones. They relied on our running family to get some of us through some very dark times.

A huge thanks goes to Sue Bennett, without her, none of these MS-UK challenges would have happened. Sue has looked after us all since the very first lockdown, with live videos on Facebook, our Purple WhatsApp group, arranging buddy up runs or walks and just being there to support her team members. Cathy Flynn Team Purple Pups.jpg Team Purple Pups thoroughly enjoyed the Big Purple walk and have raised £405 for MS-UK!'

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