I just wanted to wish you, on behalf of myself and the whole team here at MS-UK, a very Merry Christmas and a Happy New Year.
This year we have been proud to commemorate our 25th anniversary of supporting people affected by multiple sclerosis.
We have seen our newest service, MS-UK Counselling, grow rapidly as more and more people seek confidential counselling that is grounded in a knowledge of living life with MS.
Our helpline has answered thousands of enquiries and our Choices leaflets have been downloaded over 70,000 times from our website. We now have over 20 different titles, encompassing a wide range of topics, from diet and nutrition through to complementary therapies.
Our magazine, New Pathways, landed on doormats every other month, connecting thousands of people with the wider MS community. And our wellness centre, Josephs Court, has extended its range of complementary therapies and social activities to better support people affected by MS in our local community.
Next year, we will be launching our new strategy. Until then, thank you for your support in 2018. We couldn’t have done it without you.
Amy Woolf, CEO
I absolutely loved the mini mudder, it was great. I loved doing this for the charity MS-UK, because my Grandpa has MS, and it was FUN! On the day I was very nervous. I saw the adults doing it. We went to the course and I got ready.
I was running as fast as I could. The first challenge was to get through the rope. We had to squeeze! We had the tunnels they were very slippery. Next we had the monkey swing, it was like the monkey bars, but our hands slipped. That was the hardest! Then we had to run really fast up a thing like a hill. We had the running and jumping in the MUD! I swam in it. That was the most fun challenge.
SUDDENLY I saw there was another challenge! I was so tired. We had to climb under the rope. We had to do the leopard crawl.
I DID TEN LAPS OF THE COURSE!
I felt good for raising lots of money and I enjoyed telling people about MS-UK.
Mini Mudder is a 1 mile obstacle course mud run designed specifically for adventure-seeking kids. The course gives kids the chance to work as a team, get muddy, and experience the thrill of adventure. Rocco did this amazing challenge and raised over £100 in aid of MS-UK - every penny helps us to support even more people affected by mutliple sclerosis, so thank you Rocco!
With both of us having parents who are sufferers of multiple sclerosis (MS), we both believed it would be important to try and raise money to help them as best we can. At first, we looked at participating in a triathlon, but on second thought believed we should do something more extravagant, and so turned to the idea of a skydive. We knew this would put us both outside our comfort zones and looked forward to the challenge. We collected donations for around three months prior to the jump, both setting a target of £500, with an overall goal of £1,000.
As you can imagine, at first both of us made a lot of money but after a while the donations began to dry up. Therefore, we took to advertising our JustGiving page on social media, sending it to friends and family. We also asked around our schools for donations, which contributed significantly. Our jump took place on 03 November at Hinton Skydiving Centre in Brackley.
Family and friends came along to support which was a big confidence boost due to a high level of nerves. We had our briefing, met our tandem jumpers, and set off on the fifteen-minute journey up to 13,000 ft. The journey up was the worst part because it came into perspective just how high we were jumping from. On the way up, we took in the view of Silverstone racetrack and had one final briefing before the long fall back to ground. Alex jumped first, and Dan went second.
Both of us thoroughly enjoyed the experience and both genuinely believed it was the best of our lives. The feeling of falling is very hard to explain, but it's an amazing sensation like no other that fills you with high levels of adrenaline and excitement. We would thoroughly recommend a skydive to anyone thinking about doing one, the experience is so unique, and you will not regret it.
Overall, we are delighted to say to that both met out targets and ended with a total of £1,497. Once again, we would like to thank MS-UK for their unconditional support and we hope our money goes to a good cause.
Dan Wood and Alex Greene
My name is Laura and I am delighted to have been given a spot in the London Marathon in aid of MS-UK. I decided to run for MS-UK to raise awareness and funds for all those that are affected by multiple sclerosis (MS), including myself.
Since being diagnosed earlier this year, it has really motivated me to challenge myself and I thought that the London Marathon was the perfect way to do this. I must admit, the thought of raising a minimum of £2,000 was very daunting at first however with the help of my family and friends, I was able to come up with some great ideas in order to raise as much money for the charity as possible.
Even though I still have plenty of time before the marathon, I am the type of person who cannot relax until I am meeting targets or seeing results so I wanted to begin my fundraising as soon as possible so that I had less pressure on myself close to the run and so that I had enough time to enjoy every minute of raising money and also training.
I have recently hosted a coffee morning at my house which initially I thought would hopefully raise about £300. I got together with my family and friends who all pulled together to create a raffle, lucky dip, a treasure hunt and not forgetting the most important part...making cakes!
I managed to create some leaflets which I posted through neighbors doors and spread the word to as many people as possible.
When the day came, I was astonished with the amount of people who attended to support me and help me raise donations. It was a very enjoyable and successful day which left me feeling very humbled by everyones generosity.
I managed to raise an amazing £1,200 with donations still flooding in even after the event!
It has left me feeling very excited to come up with even more fundraising ideas and I am so pleased that I have been able to raise that amount of money just a few months after I was given my sport with the MS-UK team.
You can find out more about fundraising in aid of MS-UK by getting in touch with our team today using our online form!
Holidays are coming, so here's an update about our opening hours over the next few weeks...
The MS-UK office will be closed from 5pm on Friday 21 December until 9am on Wednesday 02 January 2019.
Josephs Court, our Wellness Centre, will be open during these times:
Josephs Court will then reopen at 9am on Wednesday 02 January 2019.
I was diagnosed with multiple sclerosis (MS) 19 years ago and would love to have been able to stay as I was then. But as is the nature of the beast it progresses and my walking has deteriorated. But I don’t let that stop me as I have 2 work from home businesses with Forever Living Products and Tessellate CBD oil which keeps me busy. Also 2 sons in the late teens, early 20’s!
I have great friends that I love to socialise with and a great network of MS friends that are my MS family. We socialise quite a bit with breakfasts, afternoon teas, dinners out – life is for living and although I’m not as mobile as I used to be I still like to get out with my friends.
My husband and I like to holiday and for the last two years we have been back to the same accessible villa in Hisaronu, Turkey. We have seen The Glamour Girls perform twice now whilst we’ve been there. After seeing them this year we chatted about asking them if they’d do something for us in the UK. They spend their winter months back here in the UK touring but didn’t have much availability left. We then needed to find a suitable venue, which was harder than we thought. But when we went to view Colchester United’s large function room we agreed it would be perfect, big but perfect. So then we got to work.
I love having something I can get my teeth into. This is by far and away the biggest fundraiser I have ever organised. The maximum this room holds is 300 and I would love to be able to fill it, we’re almost half way so far! The more people in there buying raffle tickets the more money we make for charity and this is what excites me more. I’ve designed the tickets and posters using photos the glamour girls sent me and have been busy leaving posters with lots of businesses in our local town to display on their staff noticeboards. Some of my friends have also done the same. I’ve advertised it lots on Facebook, Instagram and Nextdoor and even contacted the local paper. I’ve also written to lots of businesses to see if they could donate a raffle prize for us. So there’s lots to do and I won’t rest until the night..! Actually I probably won’t rest then!
It’ll be a great night, a feast for the eyes. With great costumes and songs, just a fun evening of entertainment for guys and girls.
To find out more about the event happening in Colchester, call Sharon on 0778 2240034!
We're here to help! Just email Lucy or call us on 01206 226500.
Adjusting to being diagnosed with an invisible illness can be really tough. I have bad days, but with the help of amazing family and friends it’s a whole lot easier. If you know someone with an invisible illness, you can help. The problem is, sometimes it’s difficult to know what to say or do. So here are my top tips!
If someone confides in you that they have a condition, they’re giving you a licence to talk about it. Thank them for being open and then ask them how it affects them. It means a lot when someone asks questions to understand the condition more, rather than just trying to avoid the subject. Find out from them what they need from you to help them day to day. Chances are they don’t want to be treated any differently, but there might be something that you can do to make their day easier.
2. Check in!
I go totally off grid when I’m struggling to cope with my condition. I become withdrawn and you won’t hear from me for days. At some point, someone will notice that this is a bit out of character for me and check in. I’ll admit that I’ve not been ok and they’ll tell me that they are always there for me if I need to have a moan or sound off. Thing is, when you’re in that space, it doesn’t always occur to you to do that. Make sure you drop your friend a regular text to let them know you’re thinking of them.
3. Cut some slack
It’s typical that someone with a chronic condition suffers with some degree of fatigue. That means that even the best laid plans can go wrong if they’re just too tired to function. Be forgiving if they’ve cancelled that night out for the third time in a row.
4. Don’t assume
Every day with a chronic condition is different. Some days you can take on the world and on others you can’t get out of bed. Avoid making assumptions about what your friend or family member can do. Don’t stop letting them make their own choices and keep on inviting them to social occasions. Sometimes they will accept and other times they might politely decline. But they will always be grateful that you have let them make their own choices.
5. You don’t have to find a solution
With all the best intention in the world, we want to solve people’s problems. But if the top doctors can’t find a cure for the condition, it’s unlikely that you’ll be able to provide a solution yourself. If they want you to give a solution, they’ll ask for your opinion.
Ultimately, the best thing you can do is make sure that person feels loved and cared for. They need to still feel like a person, and sometimes the best way of doing that is by doing absolutely nothing differently. Nobody with a chronic condition will manage day to day in the same way. The only way to find out, is to ask.
If you would like more information about living with multiple sclerosis (MS) you can download our Choices leaflets for free.
GFM ClearComms is getting into the festive spirit this year by launching a ‘12 Days Till Christmas’ charity campaign, whereby every day from 13 December up until Christmas Day we will be holding a charitable event in aid of a different UK based charity.
To kick start this campaign the company has decided that rather than sending out Christmas cards, as they always have done in the past, this year they will be sending out ecards and then donating the money saved from not sending out actual cards to the Essex & Herts Air Ambulance.
Bringing the campaign to an astounding conclusion on Christmas day, Justin Stone, Contact Centre Manager at GFM ClearComms, will be walking a staggering 55 miles from Colchester to London to fundraise for mental health charity Mind. The other charities that were chosen by members of staff to receive donations include MS-UK!
“We are proud to provide a variety of UK charities with our contact centre, marketing and fulfilment services; however, our interest in the charities we support goes beyond just working with them and we have and will continue to hold events like this to help these great causes. Everyone at the company is really excited for this campaign to start and looking forward to 12 days of fun activities and festive fundraising leading up to Christmas,” says Rachael Willis, CFO at GFM.
To find out exactly what the company will be doing each day of our ’12 Days Till Christmas’ charity campaign check out our website and social media channels where we will be revealing the full details of each event daily in an advent calendar style fashion!
The 25th anniversary issue of New Pathways magazine is out today. As you hopefully know by now, 2018 is MS-UK’s 25th year as a charity supporting people affected by multiple sclerosis (MS).
For those of you that are more recent subscribers to New Pathways, you may not know that this magazine started out as a leaflet called Pathways written by Judy Graham for MS-UK (which at the time was MSRC). The Pathways leaflet sought to provide people with the information they needed to live well with MS, at a time when there was very little information available, and what was there, was very limited in what it would cover.
Today, life is quite different with an abundance of information available via the internet, but this just creates noise that people need to navigate their way through to get to the really useful information they need. It really is all too easy to get lost in all the research and news, and end up more confused than when you started. But what Pathways set out to do and New Pathways has continued, is to cut through the noise by speaking to people living well with MS now, collect their stories, share them with you, and create a more sophisticated understanding of life with MS. An understanding that balances the facts of life with MS against the experiences of those living with the condition.
We see each person as an individual and treat them with the respect that they deserve; that each one of us is capable of making informed decisions for ourselves about how we wish to live our lives. That we all have the ability to absorb information and people’s experiences, and decide if something is right for us. To recognise that achieving the benchmark of ‘clinically-evidenced’ is not always going to be possible or even relevant for a good number of reasons. There is a huge difference between unproven and disproven. We have always understood that difference and will continue to use this to guide us for as long as we are here and needed.
To commemorate our 25 years, inside this issue you will find an Anniversary Special including a guest feature from Judy Graham, a feature by Tom Cutts who was diagnosed last year at the age of 25 and is coming to terms with his diagnosis, and a number of nods to times gone by.
You’ll also spot references to our history and the theme of 25 throughout this issue, such as 25 ways to raise money for MS-UK and get your pin badge on page 26.
Finally, we bring you all the usual content you have come to expect from us, including three accessible holiday stories - Julie Kicks on Andalusia on page 32, Tracy Brown in Bali on page 14 and our very own Ian Cook holidaying in Benidorm on page 38.
The 25th anniversary issue has been guest edited by MS-UK CEO Amy Woolf.