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Have your say on how the UK is doing under the UN Convention…

Posted on: August 30 2016

Hi all,

In 2017 the UN Committee on the Rights of Persons with Disabilities will conduct its first examination of the UK, looking at the steps it has taken to implement the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

They now want to hear from disabled people and people with long-term health conditions about how you think the UK is doing in upholding our rights under the UNCRPD.

Throughout September and October, seven half day events will be hosted across the UK to capture the opinions of real people.

For more information or to book your place, please email Nick Ash at events@disabilityrightsuk.org. Spaces are free, but limited, so booking is essential!

 

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If you do attend one of these events, let us know how it goes, we’d love to hear about it!

Best wishes,

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Kim Salmon

MS-UK Helpline

Join in with Channel 4 debate!

Posted on: August 25 2016

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Channel 4 News is planning a debate on disability in the UK as part of their No Go Britain series and they have reached out to MS-UK so we can let you know all about it!

Coinciding with the Paralympic games, the discussion will be live on Channel 4 7 O’Clock News program, with an audience of 100-200 disabled people.

As everyone focuses on sport, this audience will have the opportunity to debate the other, more everyday issues surrounding disability with a panel including a Government Minister, transport bosses and representatives from high street brands, amongst others. Channel 4 have said it will be a chance for disabled people to highlight the barriers in the way of ordinary life and to debate with the panel how to make improvements.

If you are interested in appearing in this Channel 4 discussion, email Joe Izzarddirectly with the following information:

  • Your name
  • Contact number 
  • E-mail
  • Location
  • Age
  • Preferred contact method
  • Additional Requirements (e.g. support worker, accessibility aids etc.)
  • Occupation
  • Issue most important to you, regarding disability
  • Other issues important to you

This will be followed up with a further call or e-mail to confirm your place and help you with any necessary arrangements.

At present, Channel 4 don’t have details regarding a date or location, as these are still being arranged. It’s worth mentioning also that Channel 4 would help individuals towards transport and accessibility costs.

If you do decide to take part or accepted on to the show, do let us know how you get on!

Good luck!

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Laura May

Marketing Manager, MS-UK

You know you CAN do it!

Posted on: August 23 2016

Today we publish another of our ‘Guest Blog’ articles from Liz.

If you would like to write an article for our blog please contact john@ms-uk.org.

You can view the guidelines for writing for us online now at www.ms-uk.org/ourblog.


liz-murby_300.jpgI am a fairly well qualified, 48 year old lady. Certainly like many readers of this blog/article, I’m sure, I have many certificates, which might suggest this to be the case, however, like you there is very much more to me than either this collection of certificates, or my own unique MS.

Each of us knows that our ‘own’ MS is exactly that, peculiar to us, unique, and probably changing day by day…over forty years or more possibly in my own case.

Happily, the same can be said of many MSers that I have met, there have been quite a few…in a 2 or 3 days at a caravan Skegness way, happy memories. Lee, Lee (popular name of its time, evidently), Rob, Vanessa, Sarah, Tina, Ed , Alvin, Canas, Dawn, et al…

Less than 12 hours ago I was very happy to spend a very productive 45 minutes or so, with Mary, who I remember from meeting 3 or 4 years ago, and her friend and colleague Alanah, both charming and inspiring ladies.

I’m patting myself on my back as I type: trying to make contact with readers of MS-UK, again…I have done successfully before, and see few reasons why this effort should be any different, indeed meeting Allanah, yesterday challenged me to do so, so I am, and here it is!

Great news from my meeting with Alanah and Mary, who have promised to connect me with activities of others in other parts of our common county, with a view to putting together an event of shared (MS) interest to anyone with a connection to multiple sclerosis. The group/branch has arranged, and indeed run, similar successful events in the past, and even has a newsletter, we should like to be able to re-connect, and see no reason not to be able to.

There’s the rub, if you’ve done something with success before, you know you CAN do it. Like me, you almost certainly hate to use your MS as a reason/excuse for not doing anything…make it a dare if you must/like…fortunately, or not, this is something that challenged me too, and I’m doing it.

After making contact with, and connecting with Allanah’s contact, my next personal challenge will be to undertake my neurophysiologist exercises (10 of each, no slipping, I’ll know and looking forward (well, my own August’s) challenge will be to attend an old (we were at University together) friend’s 50th birthday celebration, along with shared friends from Brixton, where Thinigo still lives: they shall give me a lift to Wales, and we shall join the celebration happily, together.

I look back on all of achievements, (work and extracurricular) they were very real, fun and productive in one way or another, and choose to pat myself on the back and take and develop further all the positives, there are many, and you will find the same too!…local branch/event first, almost certainly…I hope you will too, you know you can do it!

Top 5 Summer Fundraising Winners!

Posted on: August 19 2016

top-5_1.pngHave you got the post summer holiday blues? Looking for something to do during the next couple of weeks to re-live that summer fun?

Why not try your hand at some fundraising for MS-UK? Here are some of the best summer fundraising ideas we could think of to give you back that holiday feeling!

1. A huge water fight
2. A swimathon
3. A beach BBQ
4. Wear a classic Hawaiian shirt for a week
5. A mojito and burrito night

If any of these summer fundraising ideas have taken your fancy or if you have another awesome fundraising event you want to put on don’t hesitate to get in touch with Nick on 01206 226 500 or by email at Nicholas@ms-uk.org!

Nick.

MS Life 2016 – 17 & 18 September

Posted on: August 17 2016

the-ms-uk-helpline-team-kim-ryan-and-laura.jpgWould you like the opportunity to meet the MS-UK Helpline team face to face?

Have you ever wanted to find out about all the latest MS research direct from those involved? Would you like to meet the scientists and professors behind the drug therapies?

Do you have questions about any aids and adaptations, accessible holidays and travel? Would you quite like the opportunity to meet others with MS and their families?

MS Life 2016 may well be just what you are looking for!

MS Life is a large exhibition held every other year and is organised by the MS Society. This year it is coming to London Excel and we are really looking forward to being there.

Tickets are free and you can choose to attend a variety of workshops as well as visit the main lecture hall for the keynote speakers. You might even wish to pay a little visit to the MS Life Spa or watch a cookery demo!

This year see’s the return of the demonstration area, where last time we go to see the wonderful Canine Partner dogs in action, showing off their skills, as well as some fantastic wheelchair dancing. We also saw demonstrations from some of the most amazing off road trikes and wheelchairs where you can even have a go yourself.

It’s a great event to find out about things you may not have even thought of, or realised existed. It’s also really nice to meet others and for family members to learn more too.

You can book your ticket now, and don’t forget to come and say hi to us, we will be right opposite the demonstration area, you won’t be able to miss us!

https://www.eventbrite.co.uk/e/ms-life-2016-tickets-24652570502

I look forward to meeting you,

Laura Amiss-Smith

What’s app-ening?

Posted on: August 15 2016

Hello,

Last Monday we launched the new digital version of our magazine, New Pathways, and we are all really excited about it here at MS-UK!

We have now got an app, and we hope to provide information and support to more people affected by multiple sclerosis than ever before.

What is an app?

‘App’ is short for application. Usually people download apps to their smartphone or tablets, so they can access information on the go. This means you don’t need to search for a program or write in a website address to get to the things you like.

When you download an app from the app store on your phone or tablet, an icon will appear on your home screen. This is like a shortcut, which will take you to your app every time you click on it. This does not cost you anything.

When you download the My MS-UK app, it will look like this on your phone screen:

 

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You can then open the app and get started! You will be prompted to login to the app, and you’ll be able to browse past issues of the magazine too if you purchase them.np98_cover.jpg

Get this issue of New Pathways free!

To celebrate the launch of our digital version of New Pathways, for this issue only, everyone can read the magazine for free just by downloading our brand new app.

Simply search for ‘My MS-UK’ on your app store, and get reading!

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Kahn Johnson

Editor, New Pathways, MS-UK

Fundraisers of month - Rory Marriott and Hilary Fulton

Posted on: August 15 2016

rory-and-hilary-1.jpgWe are Rory Marriott and Hilary Fulton and recently we completed a 10,000ft tandem skydive to raise money for MS-UK.

I (Rory) was diagnosed with PPMS in 2014 and have received lots of help and information from MS-UK. For me this was the perfect opportunity to help raise funds for the Charity and to fulfill a 30 year wish.

Hilary on the other hand, had no intention of jumping out of a perfectly working plane!

We volunteered at the Colchester Castle Park Parkrun MS-UK Bear Fayre event in May of this year. The New Pathways magazine, containing an article about skydiving, was on the charity stand. ‘Hilary, (foolishly) happened to mention she felt envious of my planned jump.’ (Rory)

Rory and Hilary 2https://multiplesclerosisuk.wordpress.com/2016/04/20/748-revision-v1/" height="183" src="/sites/default/files/2016/08/rory-and-hilary-2.jpg?w=244&h=183" style="float:left" width="244">‘Yes, I admit I did say this, yet I did not expect that 3 days later I would be all signed up to do the jump with Rory!’ (Hilary)

As part of the fundraising we held a handicap 5km race where the aim is to get participants to finish at the same time. The slower runners set off first, followed by others who are faster with the fastest setting off last. This raised a fantastic £200 towards Hilary’s target.

I (Hilary) took part in this race, despite it being the first time I had ever run non-stop let alone 5k! I finished a respectable 2nd place, although Rory is very disappointed that I didn’t overtake the winner who just happened to be a 5 year old.

The day of the jump arrived. I (Hilary) had been feeling nervous in the run up to the day. Rory on the other hand was bouncing around like Tigger, more excitable than a child on Christmas Eve. The car journey to the airfield consisted of loud music and dancing to get us psyched up for the jump. Of course, Myles was along for the adventure too.

Everything happened really quickly from the point of arrival. Registration to pre-flight briefing, meeting our individual instructors, into flight gear then onto the plane. No time to think about backing out.

Rory was first onto the plane which he knew meant he would be last out. Even that didn’t phase him the slightest.

rory-and-hilary-4.jpg‘I was just super excited! I was taking in the banter between the instructors and loving every single second’ (Rory)

Before we knew it we were 2 ½ miles up and the doors were opened.

As the second to leave the plane, Hilary and Myles were soon in the doorway.

‘My main concern all along had been that I didn’t want to vomit in the air. With the initial drop my stomach went but thankfully for me, and my instructor, no sick! The free fall was amazing! Such a clear day, the view below looked like a toy town.

When the parachute opened my legs appeared to find a life of their own which Rory finds extremely amusing every time he watches the video clip.

rory-and-hilary-5.jpgAfter a smooth landing I got the chance to watch Rory gracefully glide down to land.

The whole thing was such a great experience and I’m so glad I did it and got to share it with Rory.’ (Hilary)

(Rory) ‘On the ascent in the plane I had said to my instructor that I wanted plenty of tricks as opposed to Hilary who wanted a nice calm skydive. It was a short wait, watching the other 5 leave the plane, before it was my turn.

Just before I edged toward the door, I started my GPS watch. The analyst in me was determined to know everything about the jump.

As we somersaulted out of the plane (trick #1) I was feeling euphoric. I can only describe the free fall element as awesome! (anyone who knows me knows that I only use that word in the correct meaning)

There were a few more trick spins before, sadly, for me, the parachute opened far too quickly. The rest of the descent was more of an amble, but you can’t beat the view!

rory-and-hilary-6.jpgFor the record, I covered the first 2km in 41 seconds and reached a maximum speed of 147mph!’ (Rory)

So far we have raised £1735.

If we have any tip for others it would be – Go for it! It might seem scary but you’re in professional hands. Enjoy it!

Experience Rory and Hilary’s skydives…

Rory’s Dive

Hilary’s Dive.

Rory and Hilary’s JustGiving pages

https://www.justgiving.com/fundraising/SkyDivingforRory

https://www.justgiving.com/fundraising/Hilary-Fulton

Want to Jump for MS-UK?

Find out more http://www.ms-uk.org/JumpForMSUK

Get this issue of New Pathways free!

Posted on: August 05 2016

np-app-blog-graphic-1.jpgHi everyone,

For a while now, we have been working on a secret project at MS-UK, and I’m so excited to finally spill the beans today… New Pathways magazine is now digital!

That’s right, you can now read the only bi-monthly multiple sclerosis magazine on your smartphone or tablet, anytime, anywhere! Our app, ‘My MS-UK’, is simple and easy to use, and it means you can read articles from New Pathways on the go, and purchase back issues. The app also includes a quick link through the to the MS-UK website.

Get this issue of New Pathways free!

To celebrate the launch of our digital version of New Pathways, for this issue only everyone can read the magazine for free just by downloading our brand new app. Simply search for ‘My MS-UK’ on your app store, and get reading!

The latest issue of New Pathways is packed full of our usual MS research and news, plus you can find out all about the MS Register, Blue Badge Style, if Inclined Bed therapy worked for Ian Cook and how Josephs Court helped Yvonne Harris.

Don’t worry, we still have our printed magazine, and you can subscribe to receive this on our website any time. If you’d like to move from printed magazine to digital magazine, just give us a call on 01206 226500 and we’ll move you over to the app.

I really hope you enjoy this free issue, and if you like what you see, you can subscribe to receive the next six issues for just £14.99.

Now, time to get ‘appy…

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Kahn Johnson

Editor, New Pathways, MS-UK

Hello!

Posted on: August 03 2016

nick_250.jpgMy Name is Nick and this will be my second full week working as the Fundraising Assistant for MS-UK! I’m just writing a post to introduce myself to all you wonderful fundraisers out there!

I am a recent graduate of Business Management from Sheffield University and got involved with fundraising throughout my time at university. If I wasn’t taking part in events, I was helping to organise and steward them. My main fundraising highlights from university are: Hitchhiking across Europe, sleeping rough for a night on the university concourse, a night trek through the peak district and finally designing posters for each of the events the fundraising society put on!

I now join the fundraising team at MS-UK as Fundraising Assistant, which entails taking care of all one off events and assisting with the larger fundraising events such as the Virgin Money London Marathon 2017. So if you are thinking of fundraising for MS-UK in a one off event, don’t hesitate to get in touch with me!

I am really looking forward to my time at MS-UK and to helping support people affected by MS through the great work the charity does. I am available for contact by email at: Nicholas@ms-uk.org and by the phone on 01206 226 500 if you would like to fundraise in your own one off event!

Looking forward to getting to know everyone!

Nick Adams

Well done to our riders!!!

Posted on: August 01 2016

cheering-point_250_0.jpgWhat an awesome day had by all yesterday at Prudential RideLondon-Surrey 100, the sun was shining and the cheering point was as loud as ever!

A massive well done to all our amazing riders who took part yesterday you should all be so proud of your achievements and wear your medal with pride. We are well on the way to reaching our fundraising target so keep up the good work.

I also want to say a huge thank you to all our volunteers who made our cheering point one of the loudest on the last corner, the atmosphere was brilliant and I know all of our riders really appreciated the support!

Our photo album is now live so please do have a look at the photos from the day. If you want to get involved in next year’s event please contact me today.

You guys were awesome!!!!

Thank you so much.

Mark

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