Last year, MS-UK launched its first ever corporate fundraising challenge. Dubbed the 925 Challenge (only very slightly inspired by the Dolly Parton hit, ‘9 to 5’), we invited local businesses to try and raise at least £925 in nine weeks, two days and five hours.
It proved to be a huge success. Teams from Ellisons Solicitors, Charles Derby Financial Services, Harp Commercial Interiors, Whitehall Electrical, Team Pivotal, Push Energy, The White Hart, OPM Response and Direct Solutions, all entered into the spirit of healthy competition and let their creative side run wild on their quest to beat the countdown clock!
The 925 Challenge returns in September and this time it’s going national! We are on the hunt for ambitious companies from every corner of the country who want to gather work colleagues together for the ultimate test of teamwork and outside the box thinking.
There’s no right or wrong way in which teams can raise the golden £925. Plan to raise funds by sponsoring the construction of a giant pyramid of cards? Go for it. Fancy hosting a slinky race? A little strange, but be our guest. Whatever shape the masterplan takes, your fundraising efforts will inspire camaraderie, raise the public profile of your company and potentially bring your local community together.
The challenge is set to launch on Thursday 12 September 2019. Then, nine weeks, two days and five hours after the first second ticks over – Saturday 16 November to be precise - the countdown clocks will be stopped!
Which team will prove to be the most innovative or imaginative? Who can showcase what it means to be a true team? Prizes to answer these questions and more will be handed out at an awards evening held on Thursday 28 November.
With MS-UK being CBW’s Charity of the Year, we got a team together to do a 100 mile bike ride on Saturday 29 June (the hottest day of the year).
The ride was completed (by most) on Saturday.
After months of hard training (or days in my case!) the day was finally upon us. Turned out to be the hottest June day since the 70s. Temperatures predicted to be about 33°C. We had a team of seven colleagues and were joined by two clients as well.
Everyone had arrived by 7:00 ready for their bacon sandwich from Leman Café who kindly opened up just for us. Nine clueless individuals set off at 7:40am heading west in the general direction of Reading. Taking the cycle superhighway from the office to our first landmark, the Houses of Parliament. I looked at my watch tracking the distance and time and we had clocked up the first three miles. I thought to myself, this is easy. In jovial spirits we started to head out of the city passing Craven Cottage (the home of Fulham FC), through Chelsea and eventually crossing Putney Bridge. Seven miles down and no issues.
First Stop – Richmond Park (8:45am). First toilet and refreshment break. After the short stop we set off, with our sights set on the next part of the trip. The tunes went on. Listening to some classics such as Ebeneezer Goode, Rhythm is a Dancer etc. the team got in their Rhythm until the sat nav took us off road. We went wrong somehow, somewhere.
We followed the Thames path towards Hounslow. Things were going nice and smoothly setting a good pace along flat roads passing Heathrow, through Staines (we saw some great towns!) and on to Runnymede, our second stop. 22 miles down and the heat was increasing. It was 31°C and refreshments were needed.
Final Stop - The George pub, in the suburbs of Reading. The clock had clicked over 50 miles, we had finished the outward bound journey, completing it in 4:43 (riding time 4 hours) and it was time to stop for a well earned lunch. We dived straight in the pub asking for menus and it was quite an easy choice. Seven Ham, Egg and Chips, a Chicken Burger and the vegetarian option with nine cokes. Checking the thermometer in the pub garden, it was showing 38°C!!!
The finish line ended up being Westminster after a few wrong turns throughout the day had meant that 100 miles was clocked up before getting back to the office.
During the journey back we sadly had three people that had to drop out due to the heat and dehydration.
MS-UK has been very supportive during the build up to the ride and gave plenty of tips which really helped organising. At the end we raised just over £2,500. It was a great day with a great team. We are looking at our next ride soon (hopefully on a cooler day).
Every penny raised by Tijmen and his team at CBW helps us support even more people affected by multiple sclerosis (MS). Get in touch with the fundraising team today to find out more about getting involved!
On Friday morning I set off to the University of Warwick to attend the annual MS National Therapy Centre Conference.
MS National Therapy Centres (MSNTC) is a charity which represents individual therapy centres across England, Scotland, Wales, Ireland, the Channel Islands and Gibraltar. These centres provide treatments, therapies, help and support to some 15,000 peop
le living with multiple sclerosis (MS) every week.
The annual conference and AGM is a chance for therapy centres to come together, share best practice and learn from each other. The conference, which was hosted by Frank Sudlow, Chair of the charity, ran over two days and included workshops, speakers and lots of updates about the world of MS.
I was particularly keen to hear Dr Dawn Langdon speak about cognition and MS and I wasn’t disappointed. Dr Langdon is Professor of Neuropsychology at Royal Holloway University of London. Her talk included an update on what research is being carried out to discover the impact of cognition difficulties for people living with MS as well as some useful insights about how people can improve their cognition by stretching their brains. It gave me a lot of food for thought!
The conference was also a chance for me to meet up with other CEOs from the national charities… David from the MS Trust and Nick from the MS Society. It was great to be able to talk to them about their work and how they are supporting people affected by MS as well as updating them on what MS-UK is doing. I hope that we can work together in the future to reach even more people and let them know we are all here to help in any way we can.
I wanted to say a big thank you to the MS National Therapy Centres for inviting us – see you next year!
Amy Woolf, CEO
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
MS-UK will be closed on the bank holiday following this weekend, so just to remind you of the times:
Friday 24 May - open from 9am - 5pm
Monday 27 May - closed
Thank you all and do have a lovely bank holiday!
Best wishes, The MS-UK team
I wanted to let you know about a new volunteering opportunity here at MS-UK.
We are looking for Volunteer Counsellors to join our team to provide telephone counselling sessions to those affected by multiple sclerosis. If you have experience of delivering person centred and telephone counselling please get in touch. The role is based at our office in Colchester and full training will be provided on 28 and 29 May 2019.
You can find out all about this opportunity on our volunteering web page, and the closing date is 10 May.
MS-UK Counselling is the only service of its kind available to people diagnosed with multiple sclerosis in the UK, so you will be joining a dedicated team that really makes a difference.
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!
'In 2016, I was diagnosed with progressive multiple sclerosis (MS) and decided to find out more about MS-UK’s wellness centre, Josephs Court, especially when it really began to affect my balance. I visited weekly and have found the welcoming atmosphere really helpful to me, especially with things such as discussing treatments, and getting ideas and tips for coping.
'Before my diagnosis, I played table tennis to county level as an under 17 and took qualifications to become a swimming teacher. In my youth, I even became a lifeguard with the Guildford Lifeguards. Many years later I joined a gym with my middle daughter Naomi, and we used to go several times a week.
'Alongside this, we also used to cycle to the school I was teaching in and where Naomi was also a teaching assistant. It really was downhill all the way to school, but uphill all the way back. Naomi was able to cycle all the way home, but I had to walk and push my bike for some of the way. Then in 2007, I moved to Great Totham so cycling to work was no longer an option, just an 80 mile round trip to school and back.
'After diagnosis however, my exercise regime was affected, and I didn’t think that exercise would work for me as it used to. My balance was going and I could no longer ride my bike as a result. I even tried stabilisers, but I continued falling off. Subsequently, I started going to Josephs Court and at first, I couldn’t really see the point of it. I could still walk even though my balance was shaky. However, I kept going and then soon realised just how much I needed what Josephs Court could offer and help me with.
'Following this, I ordered an adult tricycle, and was amazed when I was able to get on and ride it straight away, albeit not very far to begin with. But now two and a half years later, I’m able to ride 4.5 miles most days around my home village of Roxwell. I sometimes book myself in for a six week course of hydrotherapy. I think the feeling of being able to walk across the pool with no sticks or rollator is amazing.
'Because of what services there are for those diagnosed with MS, I can’t value exercise highly enough. I have always been competitive, so Josephs Court and tricycling gave me this challenge.'
Next week will mark MS Awareness Week 2019. This year we’re very excited to be working alongside the MS Trust and the National MS Therapy Centres to raise awareness of the benefits of exercise.
We have developed a free booklet all about exercise which includes some seated exercises to help you get started. We hope you find this useful and it includes first-hand quotes from other people who have been in your position - people who can truly understand and empathise with your feelings about exercise.
The MS-UK Helpline team
Another instalment as I am taken by the train to the hallowed turf that is Hammersmith Hospital. This began with an early start at 4.45am. I know, a clock should only see this once a day. Teeth were brushed, the shower was jumped in, the beard was conditioned to an inch of its life, as it has gone really dry and coarse of late. It is feeling soft once again, albeit the purple has faded somewhat. I'll probably colour it again, but will definitely do so before the Chemo in May. Mostly so the dust pan gets to look good as it is swept up.
I am now sat on the train thinking about the need to get home in good time later today, to take the prescribed pills and the magic jab juice. I have been doing all this much closer to lunch time anyway, so I have another 6 hours, give or take before it might affect my current time scales.
As far as the side effects go, I do consider myself lucky as I am taking anti sick pills, with no sickness noted. I must say I have only been taking twice a day as opposed to the instructed three times as advised. If I had the slightest inkling of feeling sick, then I would certainly be taking them as instructed. I was told about the joint aches and pains, at the beginning too. Again this gas been kind too, don't get me wrong, if I am out pottering about town, as I was yesterday treating myself to some new jeans and a shirt. (Pandas breed more frequently than I buy new clothes by the way).
Today I am feeling aches in my left hip, my lower back and my left eye again. I assume the hip and back are from the drugs, as I was informed would be the case, by Naghma, the well informed Nurse at Hammersmith, but the left eye is blind anyway, so as long as is isn't too bad, I'll not worry about it. If it was my good right eye, then it would have my full attention and I'd pop in to hospital about it.
Peterborough hospital eye clinic have always been pretty good at squeezing me in at short notice when needed. I try not to bother them unless I am getting genuinely worried about my right eye. Either way, all the aches and pains are dealt with using paracetamol.
Well, that was close. The silence on the train woke me up...phew! God knows where I might have ended up.
Once awake, and back on my stumbley clumsy feet, I took the usual walk to the Victoria line down stairs on the far side of Kings Cross station, then get off at Oxford Circus, to get on the Central line, looking for White City. From there I get on either the No 72, or the 272 bus towards Hammersmith Hospital. All was so very smooth today in my getting here. I will say though, that I really do need to get some paracetamol. My lower back doesn't half ache. Maybe a combination of the walking a fair bit over the last few days, and my being 4 days in to the stem cell generation, and the achy bones are to be expected.
From speaking to the Nursing staff here, I am now in the prime time for the aches to be really biting down. As the day is slowly moving on, yes, I can feel those aches. Do I sound like I am whinging yet?
My bloods have been taken by Nurse Harry and they have been sent off, as I sit here wondering where I can get those paracetamol tablets, on my way home.
Ok, so I fell asleep as the bloods were sent off, and was told they'd be ready after lunch, and with the time at 10.30 now, off I trot to central London for some nice food and to kill some time. I do pass a chemist, but meh! It'll be reet.
I eventually find myself in Selfridges food hall trying to eat ramen broth, but yes my right hand is still rubbish, so I am forced to eat the long stringy noodle goodness with chopsticks using my left hand. Actually I did well, and got away with it. Now back to Hammersmith, by now I am really flagging and my back is aching a lot more than I gave it credit for. It is, every now and then, a quiet groan-worthy amount of ache. I really regret not getting some paracetamol to scoff.
Eventually I get back to Hammersmith, to be told, all my bloods are exactly where they should be, and to come back on Monday for the big stem cell removal. So I say my thank yous to everyone and make my way home, thinking I knew a sly pocket full of paracetamol wouldn't go a miss right now.
I am on the train thinking, if the aches were anything to worry about, I would have bought some. I do see the aching bones as the Body telling me it is busy generating squillions of big fat juicy stem cells for me. You see, it might be super rubbish at running and tying my shoe laces at the moment, but it can spit out stem cells to order when it needs to. Thank you Body, you ain't that bad after all. Thank you X.