Hi everyone, At the end of March we officially got to change the clocks an hour forward, so we finally got to enjoy longer days and hopefully some sunshine! It’s also the start of the very traditionally British season of car boot sales. They usually happen on Sunday mornings, but seem to have got more popular over the last few years. I’ve also heard of evening and Saturdays ones locally so it’s worth checking what’s available in your area online to see times and days.
Why not have a spring clean, and have your own table for us at a car boot sale and raise some money for MS-UK? You’ll be amazed how the pennies do add up, and it’s a great way to support your fundraising if you are taking on a challenge with us.
Early mornings not for you? You could have a garage sale instead, and invite your friends and neighbours round and offer refreshments for a donation. You may even find your neighbours may want to join in by having a table or donate items for you to sell for MS-UK.
If you are part of a social group or church, you could even organise a table top sale, where people pay a fee to have a table and you charge an entry fee with all the fees going to MS-UK. We can help you with fundraising materials, and if you need buckets or collection tins. We can also offer support with how to set one up, so do get in touch. Have a great bank holiday weekend! Best wishes, Jenny Jenny Poulter Events Fundraiser
Chris Bradshaw’s Mother in law has come up with a very creative way to fundraise for his Virgin Money London Marathon run for MS-UK – quilting! Find out more in the interview with both Chris and Rosemarie…
So Chris, why are you running the marathon for MS?
My father-in law has had MS since his mid 20’s and ever since I’ve known him it’s been remarkable how he still continues to enjoy life through his high-tech wheel chair and still manages to get to occasional gigs. My mother in-law is also a hero as she is his fulltime carer and is amazing how she has the energy to do it continually and still keeps a big smile on her face! Both of these outlooks combined with supporting MS carers is why the least I can do is run the Virgin Money London Marathon.
How has training been going and what have you found the hardest thing?
Training going = Strong! Hardest thing = Time! (lack of)
Hi Rosemarie. How long have you been quilting for?
Coming up to almost 50 years now!
Why did you take it up?
Since having children I have always done some sort of sewing, be it clothes for the little one or making fancy dress costumes or dance costumes. I quilted on and off during that time but stopped when my husband’s condition deteriorated, so I became his full time carer. Then four years ago I myself became ill and spent many hours having treatment. As you can imagine I was used to a very busy life so having to sit still for several hours at a time was very difficult. My daughter knowing how I felt bought some material and said 'make me a quilt' which fuelled a passion for hand piecing and quilting. My husband who is totally disabled goes to bed around five in the afternoon until the following morning. Quilting allows me to enjoy the evening sitting with my husband whilst being enjoying my hobby.
What made you want to support Chris' marathon run in such an inventive way?
In the past I have often been asked by friends if I would sell them my quilts but my pleasure is to give them as gifts. As there appeared to be an interest in them we thought that it would be a really nice and original way to help Chris in his fundraising and at the same time allow people to acquire something nice for their donation.
What does supporting MS-UK mean to you?
The work MS-UK do in raising awareness and providing support for those with this terrible disease is so very important, so raising money is a way of saying thank you.
What is the best thing about being able to create beautiful crafts and raise money at the same time?
Doing exactly that! Doing something I enjoy whilst helping make a difference for an important cause.
Finally Chris, are you looking forward to the big day?
Absolutely! Everyone has told me how the crowds are incredible and they carry you through the pain of the 26.2 miles!
You can view Rosemarie’s quilts at https://www.etsy.com/uk/shop/SnuggleforMS?ref=hdr_shop_menu
Chris’ JustGiving page is at https://www.justgiving.com/fundraising/Chris-Bradshaw-Marathon-2017
Hello from London!
Expo has now opened to the public and its buzzing!
We’ve had our first couple of visitors talk to us about the charity! Come find us at stand 267 and say hello once you have registered with Virgin Money London Marathon.
We may have a treat in store for you!
Don’t forget you’ll need to bring your registration form and photographic identification in order to register with Virgin Money London Marathon. No registration, no running!
Expo is at Excel London and the opening hours are:
Wednesday 19 – 11-8pm
Thursday 20 – 10-8pm
Friday 21 – 10am-8pm
Saturday 22 – 9am-5pm
Hope to see you this week
From the MS-UK fundraising team
Note about travelling to ExCeL…
The DLR station ‘Custom House’ is currently closed. Instead, get off of the DLR at Prince Regent. It is then a short walk to the other entrance to ExCeL. See you there!
We’ve just arrived and are setting up at the Virgin Money London Marathon Expo at Excel, London
We’re ready to tackle any questions our runners may have for us. For those of you that don’t know what the Virgin Money London marathon Expo is, it’s a huge exhibition for all things running that happens the week before Super Sunday!
Every runner has to come and register here so that means a packed week for us showcasing what we do as a charity and getting to meet some of our further afield runners!
We’re really looking forward to putting some stories on our #ReasonToRun wall. Check out this short video of why people have run for MS-UK in the past…
Make sure you come along and visit us at stand 267 and add your own personal message.
Bring on Expo week (officially opening tomorrow!) and we can’t wait to meet you all!
The MS-UK fundraising team
MS-UK will be closed over this long weekend for bank holidays, so just to remind you of the times:
Thursday 13 April - open until 5pm
Friday 14 April - closed
Monday 17 April - closed
Tuesday 18 April - open from 9am
Thank you all and do have a lovely Easter if you are celebrating!
Best wishes, The MS-UK team
In 2016, Simon Gauge ran the Virgin Money London Marathon for MS-UK.
But he really ran it for his brother, Phil.
Phil passed away just last month. In this blog, Simon remembers his brother’s courage and quick wit, and shares his hopes for the future…
‘I contacted MS-UK to let them know that unfortunately my brother Phil, who has bravely fought MS for the past 13 years, passed away in the early hours of Sunday morning aged 43.’
Raising a whopping £33,000 for the charity by undertaking the marathon last year, Simon was inspired to take on the challenge by the bravery and courage of his brother who lived with primary progressive multiple sclerosis.
‘Phil was barely able to speak but he never lost his sense of humour.
He was my inspiration’
‘I took on the marathon because I wanted to raise money to provide help and support for people with MS whose family may not have the means to assist them in the battles they face on a daily basis.’
Simon and Phil’s parents dedicated their lives to supporting Phil to remain independent. ‘Phil was very lucky…he died in his own adapted bungalow, with family and a fantastic care team around him (he had 24 hour care). He had the worst form of the disease but I can honestly say he was happy right up to the very end.’
‘Phil always said he did not suffer from MS but had to learn how to live his life as full as possible with his MS.’
Looking to the future, Simon and his family are focusing on remembering Phil for the positive, hopeful man he was. They would like to ensure his legacy lives on.
‘I contacted MS-UK to let them know that any donations will be going to the charity. Anyone can get multiple sclerosis and I want charities such as MS-UK to be there in the future to give the information and support needed to anyone affected.’
Simon is also planning to sell Phil’s fully adapted bungalow to someone else who may benefit from its many adaptations.
Simon says, ‘It is a fully adapted disabled bungalow with a wet room and separate bedroom for carers to stay in. Rather than sell it to anybody we would like to sell it to somebody that it could benefit from it and enable that person to continue to live life independently.’
About the bungalow
137 Holme Court Avenue, Biggleswade, Beds SG18 8PA
Originally the Bungalow was a two bedroom Bungalow but has been fully reconfigured to cater for a disabled person requiring the use of a wheelchair and requiring a 24 hour care package.
The Bungalow has small gardens to the front and rear. You enter via the front door (set up so it can be remotely opened via a Possom device or similar) into a spacious entrance hall. To the left is a lean to overlooking the rear garden. To the right is a wet room with a sliding door for easy wheelchair access. It is large enough to fit a wheelchair and hoist. Straight ahead is a double bedroom and via the hallway you enter the lounge that has a fully equipped kitchen coming off of it and a storage room.
Value around £270,000
MS-UK sends our thoughts and wishes to Simon and his family, and we would like to thank him for sharing such as positive message at this time.
12 years ago today I joined, what was then, MSRC as a very anxious new recruit as the new Website Manager. I started my first day with a website of 3500 pages, a frightening number by anyone’s standards, but for someone who had only ever built his own humour website of 40 pages, in pure html, it was a daunting prospect.
In those days MSRC was housed in a two room industrial unit and it was all very ‘cosy’, for that read crammed! The staff were very welcoming and friendly, and I am glad to say that has not changed over the next 12 years, although all but 2 of the original staff then went on to pastures new.
I first came across MSRC when I was diagnosed with ‘probable MS’ back in 2003 and I went internet searching for more information on my ‘supposed’ condition. The MSRC Helpline was so caring and understanding that they won my heart over to the charity in a heartbeat. Subsequently in 2016 it transpired I did not, in fact, have MS but something even rarer, Ehlers Danlos Syndrome, but that, as they say is a story for another day.
I started work less than 2 weeks before I took on the Virgin Money London Marathon on my elbow crutches. This was a once in a lifetime event, and I still do not know how I managed to get round the whole 26.2 miles, but somehow I did, and lived to tell the tale, and raised £18,332 in the process.
Since those early days I have watched the charity grow (and outgrow) its original base and be lucky enough to see it acquire our current offices at Unsworth House and the establishment also of Josephs Court our Wellness Centre.
In 2013 I was part of the probably the biggest single event in the charity’s history, when we became MS-UK. January that year was a total blur of meetings, and midnight oil burning as we designed a whole new website and everything else that goes with ‘re-branding’. The website went live just 15 seconds late, due to ‘someone’ forgetting to push ‘the button’ and looked, if I do say so myself, gorgeous.
I have overseen the five re-workings of the website to achieve our current one, now much sleeker than that 3500 page giant I inherited, but one that delivers what people today need, up to date MS information and news at their fingertips.
I’ve seen the MS-UK Helpline transform over the years into the one we have today, manned by the most caring, understanding and wonderful people you could wish for. I have helped set up the Live Web Chat service for the Helpline, which is reaching even more people affected by multiple sclerosis, not just in the UK but all over the world. It has been a roller coaster ride both personally and professionally over the past 12 years, but I wouldn’t have missed it for the world!
John aka Squiffy
MS-UK Digital Officer
Well, issue 102 of New Pathways is out now!
As you flick through the pages you will notice we have given the magazine a fresh new look and I hope you like it.
What’s in this issue? Well, we have MS nurse Miranda Olding exploring symptoms and how to determine if it’s MS or something else. Ian Cook catches up with The Disabled Chef, James Coke and discusses how he manages to pursue his passion for cooking while dealing with MS.
And if you’ve recently been diagnosed or are struggling to come to terms with a diagnosis, Dr Amanda Bertram, reveals how Chimp Management could help you learn to cope.
You can subscribe online today or simply search for the My MS-UK app in your app store and download the digital version and get reading straight away.
Please do let me know your feedback too – just email me at email@example.com with your comments.
Editor, New Pathways
Last week the Virgin Money London Marathon charity of the year, Heads Together, released a series of ten films exploring the benefits of speaking openly about mental health. It’s spearheaded by some rather familiar faces, The Duke and Duchess of Cambridge and Prince Harry. The charities aim is to end stigma around mental health and change the conversation on mental health once and for all.
You can watch the films, and find out loads more about the campaign, by following the charity on Twitter @heads_together and using the hashtag #oktosay.
We wish everyone taking part in the Virgin Money London Marathon lots of luck, no matter which charity they are running for!