This evening we should have been getting ready for a night to remember at MS-UK’s annual Summer Ball.
It should have been a busy week for the fundraising team assembling prizes donated by many generous donors and businesses for our raffle and auction and getting all the finishing touches ready for a very special evening.
Each year we welcome around 150 lovely supporters for an evening of fine dining, fun and great entertainment in glamorous style at the luxurious Le Talbooth in Dedham, Essex near MS-UK’s home town of Colchester.
Every year, this black-tie event raises thousands of pounds for MS-UK so we can continue our work supporting people affected by multiple sclerosis.
Last June, we raised over £16,000 at our Summer Ball which is enough to fund our national helpline for over six weeks, providing vital information and emotional support to empower anyone that needs it.
Unfortunately, due to the pandemic and like many other events, the ball has been cancelled this year. This is a huge shame for both our guests who are missing a great night out and our fundraising.
If you would like to make a donation to our urgent appeal to help us at this difficult time, we would be most grateful. You can donate at www.justgiving.com/campaign/MS-UKAppeal.
One day we shall go to the ball and we are already looking forward to making the MS-UK Ball the biggest and best ever in 2021.
The date planned for 2021 is Friday 17 September 2021. If you would like to find out more information about the event please contact me on 01206 226500 or email Jill@ms-uk.org
Thank you for your continued support.
Stay safe and well,
MS-UK Fundraising Manager
Meet Amber, our six-year-old Fundraiser of the month who’s just climbed Snowdonia
We were sat one day watching the Disney film Abominable where they eventually have to climb Mount Everest. “Can we climb Everest?” I asked my dad. He said, “You need to be a bit older and Daddy needs to be a bit fitter – why don’t we climb Mount Snowdon in Wales as a start?” I said, “This sounds like a great idea, let’s choose a weekend right now!" I knew I had to do some walks around Chelmsford to train and so the week before I walked eight miles in my boots for practice.
When the weekend came, the weather was perfect! I was very excited and a bit nervous but knew I had to complete the task as so many people were supporting me.
The climb was steeper than we expected but we gritted our teeth and sometimes I had to use my hands to climb as well. It took two hours and 20minutes to get to the top. I was so happy to get there. I took a picture with my MS-UK jersey to show how proud I was.
We ate our lunch and then set off down the hill. On the way down the sheep kept making us laugh as they would stand on the train tracks and not move even when the train came.
I had two falls on the way down where I cut my hands and knees but I knew I had to carry on. It took an hour and 50 minutes to get down, so in total it was four hours 10 minutes. My daddy gave me a massive hug and told me so many people are proud of me! I got a marshmallow ice cream at the finish.
My grandad had multiple sclerosis (MS) for 22 years and had such courage. Unfortunately, he passed away last October 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 managed to raise over £3,000 and are very thankful to all the people that cheered us on this very difficult task.
If you would like to take on your own challenge like Amber, and help to raise vital funds for MS-UK, then get in touch with Lucy on email@example.com
To help Amber with her fundraising, click this link https://www.justgiving.com/fundraising/luke-holmes8
These are challenging times for charities, as Fundraising Manager Jill Purcell explains
When COVID-19 hit, we saw much of our income dry up literally overnight due to major fundraising events being cancelled all across the country. It was time to act quickly and think outside the box to find new ways for our supporters to continue fundraising for us and help us continue to provide our vital services for anyone affected by multiple sclerosis (MS).
With a bucket full of determination and a huge dose of passion, we launched our urgent appeal to raise general funds and our first-ever virtual event, My MS Marathon, to raise money for our telephone counselling service.
I am really pleased to say that we have had an excellent response to both campaigns. At the time of writing, we have received over £10,000 in donations. Thank you to everyone who has kindly made their generous contributions. It just goes to show how much people can pull together and care about our MS community. The appeal is still running, so if you would like to make a donation we’d be hugely grateful for your support.
My MS Marathon
My MS Marathon is going so well that we’ve decided to extend the event until the end of August, so there is still time to take part! We’ve seen lots of interesting challenges being taken on, from walking and running to gaming. People love My MS Marathon because it is really accessible. It’s your challenge, your way and you can take part at your own pace. It just needs to be focused around the number 26 – the number of miles in a marathon. Everyone that raises over £100 receives an exclusive My MS Marathon medal, too.
Catherine Wakefield, who lives with secondary progressive MS, was inspired to take part in My MS Marathon after a friend told her about it on Facebook. Catherine calculated that if she did a lap a day around her village green every day for a month using her “purple wheels of steel”, she could smash the marathon distance and so her challenge was born. Catherine said, “If Captain Sir Tom could do it at 100, surely I could manage a few laps around the village green!”
If you would like to take part in My Ms Marathon, all you need to do is dream up your challenge based around the number 26, pledge to raise £100 and sign up at https://www.ms-uk.org/my-ms-marathon. Thank you in advance for your support.
Whilst the appeal and My MS Marathon are working well, the road ahead is still very rocky. We are constantly working on new ideas to bring in much-needed funds so we can continue to help anyone affected by MS.
Could you volunteer to place collection pots in your local area for us?
Here at MS-UK, we have an amazing group of volunteers who we call our MS-UK Community Champions, and we are looking for more people to help.
It doesn’t matter where you are in the country, if you think you can help us to raise vital funds by placing collection pots in your local area, then please do get in touch with our Community Fundraiser Lucy today on 01206 226500 or email Lucy@MS-UK.org
Thank you again for all your support and stay safe and well,
Jill Purcell, Fundraising Manager
Rebecca Bailey was diagnosed with MS during lockdown, and a ‘desperate impulse’ has resulted in her helping others just like herself with overwhelming support, she is our July Fundraiser of the Month
Here’s the thing you should know about me, I’m not a good runner and a strange phenomenon happens where I turn into a sweaty beetroot. Ask anybody. I used to run a bit here and there, nothing fancy. But now, despite the beetroot face, I’m going to keep running until I physically can’t anymore. I was diagnosed with multiple sclerosis (MS) during the pandemic. That was a bit of a surprise for me, in a year full of surprises. And yet, this July, I’m running a (very slow) marathon over the course of the month. All 42km, bit by painstaking bit. Surprised? I know I am!
So what spurred on my July dash? I have to be honest, it was a desperate impulse. My symptoms are mostly tingly feet, but it’s pretty off-putting when I’m running not to feel the ground beneath me. Will I trip and swerve right off the path? Probably not, fingers crossed! For a while, I just wanted to hide and wait until the tingling went away. I couldn’t envision going out on the track like this. I saw the ideal version of myself I had in my head swerve off the path and fall out of sight. My confidence was broken. I stopped running.
Then I saw the MS-UK’s My MS Marathon campaign and madly thought “Yeah, alright then”. I had been trying to be vocal about my new health condition but I never anticipated what happened next. I linked up my fundraising page with friends and family and promptly forgot about it. I put my trainers on and managed to stay on the path for the duration of my run.
I have email alerts on my phone, and as I pounded my way over tarmac and dirt track, I was accompanied by the ringing sound of emails flying into my inbox. At 2km I stopped for a breather and checked out what was causing the racket. A man was running past me at the exact moment that I whooped for joy, and I think I caused him to leap out of his skin. I couldn’t believe it, I’d smashed my £100 target within a couple of hours.
Turns out, I hadn’t really told that many people about my diagnosis. My bad. They learned about it through my fundraiser, and all I can surmise is that they wanted to give me a hand. I just didn’t realise how many hands there were, reaching to give me a boost, a pat on the back, a high five. Old family friends, co-workers, lost friends, and against the backdrop of well-wishers, always my family. I haven’t seen my mum or dad, haven’t hugged them in four months. Not since before my diagnosis. But my family led the way with my fundraiser, reaching across the distance to keep me going. I was crying by 3km because my next target had whooshed by like the kilometres. By 4km, I didn’t know what to do with myself but laugh. To myself. In the middle of the street. As it rained. It was that kind of a day.
I started out doing small runs - 1.5km, maybe 2.5km if I was feeling brave. Before long, I fell back into the rhythm of my run. My muscles remembered what they were doing, I recognised the twinge of a stitch but pushed through it. I inched back up to 5km, and it had been over a year since I had the energy or the confidence to push that far. And now, when I feel like walking, I remember my backers’ messages and I keep running.
I know that for many other people with MS, having MS-UK there will keep them going. It’s so important to help support people going through this frightening time. I know because I’m going through it too, and I need all the help I can get.
I hit £1,000 last week and I don’t think I’ve stopped smiling (or running) since. I’m still on the right path, for now. If you've been inspired by Rebecca's story or would like to donate, visit my-ms-marathon.everydayhero.com/uk/running-for-my-life
I hope you are all keeping safe and well. I'm writing to you today to update you on the progress of our urgent appeal. Thank you to everyone who has already contributed, your donations will help ensure we can continue to support people affected by multiple sclerosis (MS). MS-UK saw a 44% increase in calls to our helpline in the first month of lockdown alone, with the MS community searching for essential information and emotional support. We have also seen a surge in demand for our counselling service, so it is clear to us that our community needs us, but like many other charities, we are facing very uncertain times. With fundraising events cancelled we estimate a loss of £300,000 as a direct result of COVID-19 in 2020 alone.
Our recently published Loneliness and Isolation report revealed that before COVID-19, 71% of people living with or affected by MS in the UK experience loneliness and isolation, or have done in the past. We knew all too well just how damaging this pandemic could be to our community, so we quickly found ways to adapt our services to maintain the essential support our clients need from us on very little or no income to ensure no one has to face MS alone. Our clients have seen the value and truly appreciate these new ways of receiving support, like our online accessible exercise classes and coffee mornings, but we need your donations to ensure we can continue to be here for those who need us most now and in the future.
Living with MS can be isolating enough without having to deal with the complications a pandemic brings and as the country begins to emerge from lockdown, for people living with MS life could become even more complexed. They will have many more questions, such as is it safe to return to work, can I socialise with my family, should I take my MS drugs, and our helpline team will seek out the best information and resources available so they can make informed decisions about how they too can return to ‘normal’ life.
The pandemic is not over and there are more uncertain times ahead, but together, with your help, we can ensure people living with MS emerge from lockdown safely and with the right support. It costs £2,520 to run the national MS-UK Helpline for just one week and a single counselling session for someone struggling with their mental health costs £50, so any donation you can make, big or small, will help us sustain our all-important services. To make a donation visit www.justgiving.com/campaign/MS-UKAppeal, text URGENT5, URGENT10 or URGENT20 to 70456 to donate £5, £10 or £20, or you can send a cheque to FREEPOST MS-UK.
MS-UK has been close to my heart for 10 years after my mother was diagnosed with MS in 2009. As a 15-year-old, I struggled to comprehend what this really meant, certainly in the long term, and how best to help her through what was happening. My experience as a volunteer has ranged from physical challenges to now sitting on the board of MS-UK. Being a ‘volunteer’ means different things to different people and I wanted to share my thoughts on this special week to appreciate those who give their time to causes most in need of their amazing support.
Personally, I see volunteering as a contribution to a cause that holds deep resonance. Volunteering is such a powerful concept because it presents itself as a means of contribution that anyone can undertake, for any reason, while leaving a positive impact on the identified community. I see it as a collective, the lifeblood of charities and their success. It brings together a group of people giving their time in any way they can to improve the lives of those most in need of support. It brings out the best in communities and is a unifying concept in situations that often create feelings of detachment.
I wanted to leave behind that feeling of helplessness and I felt by doing something that would help my mother but also the wider MS community. I was drawn to a cause for a very specific reason looking to support an individual and did not realise how far that contribution extends. Those closest to us benefit from the process, but the money raised/time given is felt by the entire community, and that is something that gives me greater motivation.
Volunteering for MS-UK started for me and my family with physical challenges: I have cycled to Barcelona and Paris over the last few years, my brother has done the marathon, my aunt has completed some crazy challenges that wouldn’t cross most of our minds! This was a means of contribution that proves so important to every charity and allows for both fun and very sore legs in the process.
The opportunity to sit on the board and take up a more regular and ‘back office’ position has given me complete appreciation of the incredible work behind the scenes that goes into making a charity like MS-UK possible. I have met some of our amazing volunteers who give their time to enable a small charity like ours to prosper, and their dedication and enthusiasm is essential to our success.
Being able to come together and be part of a cause driven by acts of selflessness is a very powerful concept. We all have our own ways of contributing. We all have our own reasons for doing so. The reasons and methods vary but the collective goal is what gives us a strong sense of togetherness and community, and that is what volunteering is all about.
Being a part of this community means a great deal to me and volunteering for MS-UK is something I want to continue doing for many years!
My name is Allen Ball and I got involved with MS-UK because my mum was affected by MS before she sadly passed away. I also wanted to help a local charity, helping people in my community. I initially ran the London Marathon in 2017 for MS-UK, and since then I have continued helping in a number of ways - volunteering at larger events like the London Marathon and Asics 10k, as well as smaller ones such as a fund raiser at a local pub.
Over the last couple of months during lockdown I have been trying to raise a little more for MS-UK as I know all charities have taken a hit with their big fundraising events being cancelled. For 2.6 I walked the equivalent of 2.6 times up the Gherkin on a set of steps (which turned out to be harder than a lot of the running I have done). Also, a friend of mine knitted a Myles mascot for me, which I have raffled.
Whenever I have turned up for an event, I have always been made to feel welcome and I now feel like a member of the MS-UK family. We are all a friendly bunch!
Last year I even won a prize for my volunteering, ‘Room To Reward’, which gives me a free hotel stay somewhere in the next few months.
If you are considering volunteering for MS-UK I can really recommend it, and you would be more than welcome.
Hello, my name is Sophia, I am Seven years old and I care a lot about MS-UK - It feels cool knowing I’m MS-UK’s youngest volunteer! I started volunteering because I like helping MS-UK and I want to help people affected by multiple sclerosis (MS), I want them to feel happy and have a smile on their face. My great aunty Loraine has MS and she isn’t very well. I started by helping her, but I also want to help other people too.
I started volunteering for the MS-UK cheer-point cheerers when I went to watch my mum run the Virgin Money London Marathon in 2017. My dad and I cheered with Jenny at mile 17. I enjoyed it so much I wanted to do it again! Sometimes it gets cold standing around but I don’t make a fuss because the cheering is more important!
The best bit of volunteering is cheering everyone on at events, especially when I’m allowed to use the megaphone! I like to cheer all the runners, “Well done runners! You can do this! Do not stop! The quicker you do it, the quicker it’s over!”. I also like to look out for the purple t-shirts so I can shout MS-UK! And one time Jenny bought me chips so that might be the best thing that’s happened at an event!
I am Nigel Watts and as I am unable to participate in “walks” or “runs” to raise funds for MS-UK, instead I have volunteered my time, either at home or in the MS-UK office, to help with identifying potential 3rd parties to approach for future funding and to provide taxi transport for some of the clients who attend its wellness centre, Josephs Court. I have also contributed to the existing Choices leaflets, proofreading for consistency, grammar and spelling.
In addition, I have completed an MS-UK Helpline case study and I am one of the founding members of the MS-UK Steering Group which meets every two months. Even under the current lockdown measures, we still meet using Zoom!
The MS-UK Steering Group is made up of seven volunteers who use Josephs Court and is led by Centre Manager Dean Jeffreys. The purpose of the MS-UK Steering Group is to discuss how the centre is working to satisfy the needs of members who use the facility, any suggestions of improvement or change. It is also a great place to just chat about life in general. Anything discussed in the group stays in the group.
Outside of Josephs Court, I am still able to volunteer through putting together mailing lists online for MS nurses, neurologists, MS therapy centres and pharmacies.
I have found my time volunteering both at home and at Josephs Court very fulfilling as the challenges have kept my brain working. Volunteering is also a pleasant change from playing Solitaire or Sudoku!
I woke up on Sunday 26 April, London Marathon day, or at least it should have been! It should have been the 40th anniversary of the event. I thought about those who should have been taking part, the months of training, the moments of pain and the little victories along the way. I picked up my phone with my cup of tea and started catching up on the social media updates when I came across an MS-UK post on Facebook “The 2.6 challenge, Save the UK's charities, 1 Day to go”, and it was posted yesterday meaning launch day was today!
I dropped a quick comment to ask if it was too late to sign up and on hearing I wasn’t too late, I quickly started thinking about what I could do. I glanced around and saw the face of the famous Pokémon Pikachu painted on the side of my beer barrel from a previous event, he looked at me smugly from across the room and my challenge started to come together.
I decided that I was going to dust him off and carry him while running 26.26km, in keeping with the 2.6 challenge. I set up my JustGiving page and told the world about my challenge for MS-UK.
It got to 5pm and as I was walking to my start line I check my JustGiving page to see I had already raised over £200, which was the perfect little boost I needed before setting off!
At 5km in my elbows were already screaming at me, I had some water and a bit of flapjack and set off up the river path. I negotiate the barrel into different positions to ease the pain on the elbows. If I held it in one hand over my back it bounced on my shoulder blades, in front of me it banged on my hips, two hands behind my head and my elbows filled with pain, there just isn't a comfortable way to carry that thing! I focused on all the reasons I was doing this, I'm running this for my parents, I'm running it for those that can't, I'm running it to raise vital funds for a charity that is due to lose out. This isn't about me or my challenge, it's about them.
I reached the half way point and pulled out my phone to find messages of support, I snapped a quick photo, picked up my barrel and continued my run feeling a little more refreshed from those encouraging words. I saw a family ahead and moved well over to let them pass, but really I was grateful for a short rest. As they passed I heard, “You do realise they make smaller water bottles mate?” It made me smile and once they'd passed I carried on, getting ever closer to the end of my journey.
Three hours after I had set off, the sun had started to set in the sky and I was just 3km from the finish. I took one quick photo with the sunset and then I picking up my pace because I knew I was almost there. Literally on the home stretch now and running towards my house, barrel in front of me, I was regularly checking my watch for distance. I watched the numbers tick over… 25.90, 26.00, 26.10, 26.2... 26.26km, I was there! It was done! My hands felt bruised, my legs tired and I felt like what I had just achieved was harder than the marathon itself. I checked JustGiving again to find the total was now over £300! I was astonished at the generosity from friends, family and even social media followers.
It was then time for a bath and a cup of tea! I feel happy to know I've helped my charity in their time of need.
If you would like to make a donation to Gavin’s fundraising page visit his JustGiving page here.