On Friday 21 June we held our annual MS-UK Summer Ball with the theme of a Midsummer Night. Our games, entertainment from The Lisa Graham Duo, alongside our sensational auction and raffle produced donations that we couldn’t be more grateful for, truly signifying how much a success the night was.
We managed to raise a staggering £17,010! This will go so far in helping us support even more people affected by multiple sclerosis (MS), thank you so much to everyone who attended!
Over 140 of you came along, fromour trustees, clients, marathon runners, volunteers, networking groups to our community champions. We kick-started the night with an entertaining quiz, the heads and tails game that was themed appropriately with summer themed questions, of course.
Following some entertainment, the auction was on its way. With an outstanding ten prizes on offer generously donated by various companies and people, there was a lot to bid for. From an Anthony Joshua signed glove, a spa break for two at Champneys, Six Nations 2020 tickets to a private BBQ for 20 guests, there was huge variety! Similarly, our raffle prizes had the wow-factor to match. From the three course dinner for two, a Bose portable speaker, to the family portrait photo shoot, there was a lot to play for.
Certainly the prizes were astounding but the reason everyone attended was for a much more heart-warming reason. It was to help us raise thousands of pounds so we can be here now and in the future. With the support of so many amazing people at events like this, we are able to offer our vital services to more people living with MS.
Gregg Rice, an attendee of our Summer Ball said ‘I like to support MS-UK as my partner is affected by MS. I’ve run two marathons as I’ve felt it’s important to support what MS-UK do. Again, this was another fantastic night raising money for such a worthwhile charity, and I’ve felt truly humbled by the atmosphere there’.
We would like to warmly thank all those that donated prizes for our raffle and auction and to all those that attended to bid for them. You made it a very magical evening.
See you next year!
Jill Purcell, Fundraising Manager
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!
Hi, 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.
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.
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.
This week is national Volunteers' Week and we are celebrating by saying a big thank you to our amazing volunteers. Last year over 130 people volunteered with MS-UK in all sorts of ways. Together you donated 500 hours of time to MS-UK and helped us be here for people affected by multiple sclerosis (MS). We literally couldn't do it without you, thank you!
This year we have lots of opportunities to get involved. You could join our fantastic cheer squad and support our fundraisers to make it over the finish line at a national event. Or you could come into our offices in Essex and get stuck in behind the scenes. We are also currently looking for volunteer counsellors to help us offer telephone counselling to more people who may need it across the UK.
Whatever you decide to do, we'll be here every step of the way to support you. You can share your skills and develop new ones, gain some experience working with a national charity and we provide you with a full induction and ongoing support.
In the mean time, you can find out more about Volunteers' Week across the country on the NCVO website. If you already support MS-UK, don't forget to download our Twibbon to show the world you are part of #TeamPurple.
Best wishes and happy volunteering!
Sarah Wright, General Manager
On Sunday March 23, more than four thousand people took to the streets of Colchester to be part of the towns’ biggest community sporting event the year, the Colchester Half Marathon.
The event is organised by a group of volunteers from Colchester Colne Round Table who work tirelessly throughout the year to stage this fantastic event. All the proceeds from the race are shared between local charities.
This year MS-UK were lucky enough to have been chosen as the main charity beneficiary for the event. Brain injury charity Headway Essex were the other charity partners. MS-UK worked closely with the organisers and recruited a team of over 100 volunteers and 50 runners to support the event.
Taking on a half marathon is brave enough, but not enough of a challenge for MS-UK’s long term supporter Clare Thompson and her running buddy Dave, who completed the course wearing an MS-UK branded purple tyre!
It was a great day, everyone had loads of fun and the Great British weather was exceptionally kind to us too.
This week MS-UK received a very handsome donation of £48,750 from the event. Jill Purcell, MS-UK’s Fundraising Manager said 'We are delighted to receive such a fantastic sum of money raised from the event. The amount is equivalent to MS-UK being able to provide specialised supervised exercise sessions to more than 50 clients for a whole year at Josephs Court, our wellness centre in Colchester. Thank you to the Colchester Half Marathon committee, and all runners and volunteers for their generous support. It is always a great event which significantly benefits the local community too'.
Every penny raised from the Colchester Half Marathon helps MS-UK support even more people affected by multiple sclerosis (MS), by raising awareness of the condition and offering services like our helpline, MS-UK Counselling and New Pathways magazine.
Thank you so much to all involved and our amazing #TeamPurple runners!
We can't quite believe it but we have just seen another Virgin Money London Marathon take place and it was amazing to see so many #TeamPurple runners taking on the challenge in aid of MS-UK! Thank you to every single person who made the day so special.
Now we're looking to next year and the date has been announced - 26 April 2020! The ballot for the Virgin Money London Marathon is now open, so visit the website to register today! It will close this Friday at 5pm, 03 May.
Good luck everyone!
So in today’s blog I’m going to talk about something a little more serious and the topic is dealing with my hair falling out due to the chemotherapy.
At first I will say and as you can see from the video, it was a bit funny and humorous to me. But those are the magic words, “to me” and just me. The bigger picture is obviously that multiple sclerosis (MS) affects twice as many women as it does men, so for every one of me as a man, there are two women. As I was washing my hair this morning in the shower, there was a nice ring of my hair about my feet, which to be honest was something of a surprise and not a terribly pleasant experience. It did leave me with a curious feeling, thinking about other people that may not be approaching this in the same way that I am. I can see that a woman would be very proud of her hair, or a man for that matter, a lot of men can get uppity about losing their hair. Nature takes some men on a biological one-way trip and their hair just falls out anyway regardless of chemotherapy and that’s just life, there are plenty of strapping bald men out there.
I did actually feel my heart sink a little bit when I thought about people who are proud of their hair and spend a lot of money on it. It can define some people. This is not meant to sound like it’s a vanity thing because it just isn’t, but watching my hair falling out as I was washing it this morning left me with a small feeling of dread for myself. What if it doesn’t grow back? Which isn’t too bad, as I used to shave my head all the time anyway. But for those that don’t view this the same way as I do, it must be such a huge heavy heart sinking feeling. I can see how it might feel at this stage of the initial HSCT chemotherapy, almost like a point of no return, the hair is going to go. Writing this, it makes me feel more than a bit solemn when I think about the big picture and the many different people that this will involve.
One of the few things I can think of that may help in this situation is to have a good positive mental attitude. I don’t mean to sound patronising, but it can become such a strong powerful weapon to have in your little arsenal and that is what gets me through. Yeah, the hair is going right now, but just look to the future not so far away. You’re talking six months from now, which is a snap in our lifetimes really and isn’t really that long at all. We would have collectively come through the other side of the chemotherapy, and we shall be growing fresh new baby soft hair, colour back in our cheeks, a spring in our step and no MS.
Another positive view on this was one my wife brought up. She said this is my old MS hair and it’s been removed to make way for my new non-MS hair for the new non-MS me. It’s a very useful sentiment and one I will carry closely with me as I go through each stage of treatment.
No MS is what we need to focus on right here, right now as the collective, going through the chemotherapy to rid ourselves of the MS that we are all battling with. My eyes are firmly fixed on that, and as I have said before I want to run, probably not for the first few weeks or months, but I will run. We the collective MSers now have a way out of the previously never-ending inescapable tunnel that I personally could never see the end of. HSCT is a gift that few are blessed to receive, so losing our hair in the meantime is an insignificantly small price to pay for us to have our lives back, with or without limitations.
Scott has decided that he will shave his beloved beard off to raise money for MS-UK. Anyone who has been following his story will know how much his beard means to him, so if you would like to donate, visit his JustGiving page or Facebook fundraisier.
If you’ve been effected by the topic discussed in this blog, please contact the MS-UK Hepline on 0800 783 0518.
'I was inspired to run for MS-UK by my Aunt Karen who was diagnosed with relapsing remitting multiple sclerosis (RRMS) in 2012. Despite how much of a change her diagnosis has brought to her life and the daily challenges it now presents to her, I find myself in awe with how she hasn’t let it hold her back. I was drawn to MS-UK in particular due to the great services they offer to those affected, such as the helpline, counselling service and wellness centre facility. Services like these were so valuable and essential to helping my aunt, so raising money to ensure they are provided to others who need them means a lot.
'The main challenge I faced when I found out I had a charity place last June was that I had never run before and it didn’t come very naturally to me. My main support came through joining a local running group, which has really helped me through the winter training runs and longer runs recently.
'To fundraise for MS-UK I utilised my job as a Makeup Artist in order to hold a luxury beauty raffle. I was very lucky to be gifted items after asking various colleagues for contributions to the prizes. I managed to gather together enough items for three large prizes and decided to sell tickets for £5 each. I posted about the raffle on social media, as well as my local running group’s Facebook page. I sold 109 tickets and raised a total of £545. After the success and popularity of the first raffle I’m looking to hold a second one!
'Make sure to put yourself out there, whether it be on social media or in your work place. I’ve posted regular updates of my training onto Facebook and Instagram to let people know about my progression and to let them know about why I’m running for MS-UK. Also not being afraid to reach out to local businesses or friends to see if they would be willing to donate items as prizes, if you decide to do a raffle. I was really overwhelmed by people’s generosity, so it’s always worth asking!
'I feel extremely lucky and proud to be able to run the London Marathon for my aunt and to be able to raise money for MS-UK. I’ve recently completed my longest training run (20 miles), which I never could have imagined myself doing! Knowing I’m running for such a great cause has really helped to motivate and keep me going with my training, and although I’m nervous, I can’t wait for start-line of the marathon!'
Earlier this week, Scott McCormick had his stem cells harvested for HSCT treatment at Hammersmith Hospital
Meet Eros! That’s the big old chunky machine next to me, a centrifuge in essence, which will be taking my blood and spinning it. As the image below shows, the heavy red blood cells, will separate and settle at the very bottom and just above is an amber, orangey band; these are the magical stem cells, which will be decanted off for use later. The top and majority is the plasma, the main carrier of the bloods components. Fascinating stuff.
This morning, when my blood results came back from the lab, they informed me that my stem cell count was very good at 3.13 million. I went to sleep in the room as they harvested the cells. Yay, a few ZZZZs!
Due to my count being a good one, my bones have let me know they have been working hard by aching quite a bit.
Eros was a good fella and did his job so very well. I found out that there are only three of these amazing machines at Hammersmith Hospital and cancer patients get higher priority, so that’s why there is a systemic bottle neck for HSCT treatment for MS patients. Seeing and hearing this really did make me aware of how lucky I am to have made it past the selection board.
And here they are. Have a look at that bag of freaking magic! Three million plus stem cells hot off the press, well my arm.
They have been confirmed as good to go and cryogenically frozen until my call back in a few weeks’ time.
To find out more about how this part of the treatment went and how Scott is feeling now, view his latest vlog here.
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.