Like many others, I lost a special someone to this cruel disease on 13 February 2002 - my Mum!
As a promise to myself, I have vowed that for each landmark birthday I have - my mothers name, Deborah Bendell, will be honoured - as without her, I wouldn’t be celebrating at all. So, for my 25th birthday I am hosting a Dinner & Dance in aid of this amazing charity, MS-UK.
Multiple sclerosis is a cruel disease and those who suffer with it can often deteriorate extremely quickly and unfortunately this was the case for my Mum. Despite the pain and suffering my Mum went through, she’ll always be remembered for being the happiest and cheekiest person in any room. I aspire every day to make her proud and resemble her in some way - so for me, this fundraiser is just the start of a long journey.
I may not have had much time with my Mum, as I was only 8 when she passed; however I know the support we received after her passing was second to none and this charity, MS-UK, is able to offer similar to others in need too.
So the long and short of it, if you aren’t able to celebrate with us on 27 April at the Dinner & Dance (see below the flyer for contact details) but would like to contribute to this special charity, any spare change to reach my goal is unbelievably appreciated!
In memory of Deborah Bendell, my Mum, and other loved ones suffering!
It's a beautiful day in the capital, and our amazing #TeamPurple runners are getting ready to take on the Virgin Money London Marathon in aid of MS-UK.
They will be joining so many other dedicated charity supporters this morning, and at last count the event had raised collectively over £20,000,000 for charities!
So, why have our runners decided to get involved? Vic, from Essex, remembers watching her Dad run when she was a child. Now she's running in his footsteps, as he no longer can. Sue and Ellie-Rose are a mother and daughter team taking on the mighty 26.2 miles together. The Boland family are all in it together and have flown over from the USA to run today. So many reasons, but each one has been touched in some way by multiple sclerosis (MS).
All week we have been at the Expo event, meeting our runners and wishing them lots of luck.
Have a look at the messages of support, positivity and determination that they wrote on the MS-UK #TeamPurple runners wall in our Facebook album today!
For everyone running on 22 April 2018, whoever you're running for, good luck.
You can follow MS-UK on Twitter to see marathon day live updates!
Today marks the beginning of Expo, four days of fun-filled excitment at ExCeL in London where runners taking on the Virgin Money London Marathon will be registering this week!
Every year over 100 runners run 26.2 miles in aid of MS-UK, raising thousands of pounds for us. Over 100,000 people in the UK live with multiple sclerosis, and we want to be able to provide our vital services to everyone who needs them, so every single penny they raise goes towards helping MS-UK continue our work.
The MS-UK fundraising team is ready to welcome #TeamPurple to Expo this week, so if you're coming along please say hi to us on stand 583!
Wednesday 18 April 11:00-20:00
Thursday 19 April 10:00-20:00
Friday 20 April 10:00-20:00
Saturday 21 April 09:00-17:00
We'll be live tweeting all week from Expo (and of course on marathon day itself this Sunday) so follow us on Twitter to stay updated!
Jill Purcell, Fundraising Manager
This time next week MS-UK will be celebrating MS Awareness Week, and you can join us!
This year we are spreading the word about our newest national service, MS-UK Counselling. I would love you to get involved by downloading our Twitter and Facebook graphics...by adding them to your profiles you will be helping us reach even more people affected by multiple sclerosis who may benefit from counselling.
Right click on these images and select 'Save image as...' to download them to your computer:
Thank you for your help!
When I was eight years old I remember joining thousands of other people lining the streets of London, waving and cheering as streams of people ran past. At the time I didn't really understand the enormity of what those people were doing, running mile after mile, some fast, some slow, some walking but all in the aim of completing 26.2 miles. Amongst those people was my Dad.
Fast forward a few years and my Dad had to take every ounce of energy he had and a hell of a lot of drugs to pull himself out of his wheelchair and slowly holding tight on to me, walk a few steps down the aisle of a church on my wedding day. He had been diagnosed with multiple sclerosis (MS) the year before and had his world turned upside down. From being fit and healthy, in the Police to being forced to take early retirement and a complete change of life.
For years after I watched my Dad, I would watch the marathon on TV every year saying to myself 'one day', and since taking up running the itch has needed scratching so I decided the year I turned 40 to make my bucket list dream happen to take part in the most amazing marathon in the world.
As soon as I heard I'd been accepted to run for MS-UK I set the wheels in motion for my fundraising, looking at where I could start generating easy money with little effort whilst I planned a big fundraiser. Sponsorship started coming in as soon as I announced my challenge and as a Slimming World Consultant I have had amazing support from my members for my fundraising. I have a change pot in group and my members along with other groups in Chelmsford, Essex agreed for the next few months to have these for MS-UK. Everyone's odd 5ps, 10ps are really adding up to over £50 a month donated this way. Again members supported through donating their slimmed out of clothes which were swapped for cash and a Christmas raffle in my groups raised £284.
Michelle who runs Chelmer RoadRunners, a local running group which is where I first learned to run completing a couch to 5km course, sings in a local band and I approached her to sing at a charity night I was planning. Seen as she got me into the mess in the first place it seemed fitting to have her at the event! A local pub was the venue (free hire to maximise funds raised!) and with the fabulous entertainment, a raffle to be held. After hundreds of letters, emails and approaching local companies I managed to secure some great donated prizes and started selling raffle tickets to people who couldn't make the night, again to ensure I raised as much as possible. Promotion of the event went out on social media, posters up locally and great support from local papers - three have now printed my story to help further support!
The charity night went well, everyone had a fantastic time and most importantly a brilliant £1,186.06 was raised to bring my total fundraising over my initial aim of £2,500 - but I'm not stopping there - a sweepstake planned, further change pots and sponsorship will hopefully bring the total to £3,000, or more! Every penny will help MS-UK give amazing support to people like my Dad.
So now, the countdown is on till the big day itself where I shall be so proud to be running the same streets that my Dad did in 1986 (but not accepting his challenge of beating his time of 3 hours 35 minutes!)
My name is Rosie and I am in my second year of university, I am studying Politics at Leeds. I grew up in a very active family where Mum and Dad encouraged us to play team sports at school, took us on regular skiing holidays and liked us to push ourselves. Although not as athletically blessed as my brothers, I still took part and enjoyed every moment.
Upon arriving at university, hours spent doing physical activity dramatically dropped and by the end of my first year I knew I needed a challenge to get me going again. The Virgin Money London Marathon had always been on my agenda having watched my Mum train and run both London and New York for MS as a child and then more recently witnessed my older brother complete it. My Mum ran for multiple sclerosis for her brother who has lived with the disease for almost two decades…hence why MS-UK seemed an obvious choice for me! So one day as procrastination from some university work, I entered the ballot and applied to a couple of charities that were close to my heart, not really thinking anything would come of it. A couple of weeks later I received a call from Jenny who offered me a place for MS-UK, and I accepted it…and that is how I am here lining up to run the London Marathon!
Upon returning to university, I started my training plan…let me tell you nothing sorts out a hangover like a 5mile run in the cold! All was going well until the end of October when I started to get this searing pain in my foot every time I put it down, having ignored it for a while my friends dragged me to A&E and I heard every runners worse nightmare…you have a stress fracture. So I dutifully spent the next 7 weeks in a moonboot, doing very little and followed the doctor’s advice to the T as I returned to running. I am now well back on track, although I have to take it a little steadier than I would like, I have completed a half marathon in 2 and a half hours. I have three more long runs till the big day and the excitement is building with each week!
Finally, fundraising is going well! I have had some very generous donations from friends and family. My first sponsorship push was to write to all my Mum and Dad's suppliers and ask for donations, and golly were they charitable! Its been a busy couple of months juggling training, fundraising, university, eventing, working and maintaining some sort of social life but I wouldn’t have life any other way!
Thank you to everyone who has supported me and hopefully see you the other side of the finish line!
April is always an exciting month for us here at MS-UK as we mark MS Awareness Week, and 2018 is no different!
This year we are celebrating our newest national service, MS-UK Counselling. We launched the pilot of this service in October 2017 and since then have delivered over 150 telephone counselling sessions to people with a diagnosis of multiple sclerosis. But we want to help even more people!
At MS-UK, we believe that it’s good to talk. However, we know that there can still be a stigma around accessing counselling, and we want to break down these barriers so people diagnosed with multiple sclerosis can get the support they need.
So, this MS Awareness Week I ask you to help us spread the message that it’s good to talk! Throughout the week of 23 – 27 April we will be posting on Facebook and Twitter all about MS-UK Counselling, and it would be great if you could help us spread the word by retweeting or sharing our posts. Thank you!
Keep an eye on our blog for updates as we near the big week...
I am pleased to say New Pathways issue 108 is now landing on doormats across the country! As always we have a packed issue, full of all the latest multiple sclerosis (MS) news and research, including drug updates and the latest cannabis study findings.
As the sunshine begins to make an appearance, we get topical with lots on vitamin D. MSer Ian Cook puts vitamin D tablets and sprays to the test (see page 30) and Kahn Johnson reveals what happened when his vitamin D levels became toxic on page 16.
Also in this issue, MS Nurse Miranda Olding discusses sexual dsyfunction and what can be done to help (page 14) and we have the big interview with the star of Channel 4 programme 'The Search for a Miracle Cure' Mark Lewis (page 24).
I hope you enjoy reading this issue, and please do email me your comments and letters to firstname.lastname@example.org.
Editor, New Pathways
P.S. Don't forget New Pathways is available to read on the go. Download the My MS-UK app from the App store on your phone or tablet device today!
Back in October last year I decided to apply for the running of the Virgin Money London Marathon in aid of raising money for MS-UK. It was less than a week later that I was delighted to receive the phone call that my application had been accepted.
My Mum, who has had the condition for a number of years is the reason why I am running for MS-UK.
Everybody who knows my Mum will agree, she is a completely selfless individual, always putting other people ahead of herself and has an admirable ‘just get on with it’ attitude towards her condition. By running the London Marathon for MS-UK, hopefully I am giving something back, however small it may be.
At the point of my Mum’s diagnosis, I wasn’t aware of the symptoms of multiple sclerosis nor had I heard of the condition at all, which, along with raising as much money as possible for MS-UK, is one of the main reasons I am sharing the fundraising as far and wide as possible – to raise awareness and understanding of the condition, which I know is an objective I share with the fantastic work that MS-UK undertake.
Having already raised in excess of £2,000 with over 7 weeks to go until the big day (at the time of writing this), the fundraising so far has been fantastic and has far exceeded the expectations I had. People’s kindness and generosity so far has been a huge source of motivation for those dark, freezing cold training runs which I have no doubt all the other runners for MS-UK are also enduring at the moment.
Due to the recent weather conditions and a couple of injuries, I can’t say training has been straight forward but nonetheless, remains on-track and now approaches its latter stages with a few more long runs to go, before gradually tapering the distance down as race day approaches.
A massive thank you to everyone who has donated so far, it’s hugely appreciated by my Mum, MS-UK, my family and myself. I am hoping to keep the momentum going by reaching £2,500+ by race day so please read my story and donate if you possibly can by visiting my fundraising page.
Good luck to all the other MS-UK runners with the remainder of your training and fundraising.
Thanks for taking the time to read.
MS-UK’s Wellness Centre, Josephs Court works closely with the University of Essex to support occupational therapy students (OTS) by providing role-emerging placements while they train.
Each year the Josephs Court team is invited to speak at a symposium with the new OT recruits about role-emerging placements at its Wellness Centre in Colchester, Essex and increase their knowledge of multiple sclerosis (MS).
Diana Crowe, Head of Services, said: ‘We took the opportunity to promote all of our services, but focused on what we deliver at Josephs Court, such as the exercise equipment and the benefits this brings to clients.’
‘There was good interaction and we were asked about the social activities we provide, so we discussed the MS-UK Social Group in Colchester, which has regular coffee mornings and other events such as bingo!’
‘Due to recent headline news regarding HSTC there was an interest in how this treatment could impact on us as a charity and our clients. Just like everyone else we will have to wait and see how the treatment develops, but we will continue to support people with MS for as long as they need us.’
‘We split into groups, which gave us a chance to speak in more detail with some of the students,’ explains Dean Jeffreys, Centre Manager. ‘The students were interested to know about APS Therapy, how we link up with other services and how politics impacts on our strategy.’
Speakers from St Helena’s Hospice spoke about its gardening project for those at the end of life and Craig, from Pots the Soldier, spoke about his post-traumatic stress diagnosis after leaving the army and how he found a love of pottery thanks to the support of OTs – very inspirational!
‘It was great to see the students so interested in the work MS-UK does and we hope to continue to work with Essex University over the coming years. Who knows one day we may have our own MS-UK Occupational Therapist,’ adds Diana.