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The 555 Neurology Project is here!

Posted on: January 29 2016

Hi everyone,

I am really excited to announce that we have launched a new project this week, which will capture the real experiences of people of being diagnosed with multiple sclerosis (MS) and other neurological conditions in our home region of Essex.

We are working with Healthwatch Essex and the Essex Neurology Network to host five focus groups across the county, and we need your help to spread the word!

Anyone who lives in Essex, is over 18 years old and has been diagnosed with a neurological condition (including MS) in the past three years is able to attend a focus group.

You can find out all about the focus groups online at www.ms-uk.org/555 and register on there too if you’d like to attend!

I am particularly excited about this project as it sees eight charities joining together in Essex to run the 555 Neurology Project, urging the public to speak out about their experiences of being diagnosed with a neurological condition.

These conditions include acquired brain injury, epilepsy, Huntington’s Disease, Motor Neurone disease, multiple sclerosis, Parkinson’s disease, Progressive Supranuclear Palsy or stroke, and affect over 35,000 people in Essex.

I really hope you can attend a focus group, and if you would like any information at all about what’s involved, just email me at Ryan@ms-uk.org or call me on 01206 226500.

Best wishes,

Ryan

MS-UK

MS-UK Virtual Insight Panel

Posted on: January 27 2016

I am particularly excited to be bringing this new development to you. This year MS-UK would like to set up a Virtual Insight Panel made up of people living with multiple sclerosis (MS), their family, friends, carers and professionals. We need you and those around you to share with us views, ideas, and experiences to help us shape our services, materials and future developments at MS-UK.

This insight is incredibly valuable as it will bring us perspectives that no one else can give and will make sure we stay on course to provide people affected by MS not only with what they want from us, but crucially, how they want it.

If you choose to take part you will be ensuring the voices of people affected by MS are not only heard, but actively listened to and acted upon. You will become an active participant in the MS community and have the opportunity to share your experiences and ideas.

You will help us shape the future of MS-UK!

Everyone affected by MS has something valuable to give, please help us in our mission to empower anyone affected by MS to live life to the full!

Visit our website to find out more about how you can get involved and register to be a VIP!

Panorama programme - follow up

Posted on: January 26 2016

I’ll be honest, when I wrote the blog about the Panorama programme, I wasn’t expecting there to be a response – after all, this was just me sounding off, surely?

Seems not.

Quite a few people have responded, and it seems I am not alone in not liking the tone or brevity of the programme.

Danielle Reilly said she felt ‘cheated and deflated’, adding that she thought the programme could be ‘daunting’ for the newly diagnosed.

Kirsteen posted that she thought the episode ‘gave false hope to those whose family members have MS’ while Nikki picked up on the point I made about the programme only showing the positive side.

Many of you also felt that the programme was too short, while many rightly pointed out that people with primary progressive MS were not even given a mention, let alone any hint as to what such treatment might mean for them.

Louise, meanwhile, suggested I was lucky to be so glib about having MS. I am glib about it, I fully concede, but that’s just how I deal with it. I in no way ever mean to make light of what others go through.

If it seemed like I was, then I apologise. That was never my aim.

We all have our own approach, and that’s just one of the ones that works for me.

Please keep your comments coming in. My hope is to speak to the programme makers in the coming weeks with a view to presenting people’s views and reporting on their response in New Pathways 96.

I’m also hoping to speak to the team in Sheffield, again asking the points you have raised, while looking at other areas of stem cell treatment – including, hopefully, clinics in other countries.

Thanks again for taking the time to share your views.

Hopefully we can keep the debate going and continue to help and support each other.

Kahn

Editor, New Pathways

Affected by the show?

You can contact the MS-UK Helpline to discuss anything related to multiple sclerosis. Just visit our website to live chat with us, or call 0800 783 0518.

RideLondon

Posted on: January 26 2016

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Are you waiting on the ballot results to come out next week? If you want to get yourself a guaranteed entry then come and ride for MS-UK. Whether you are a complete beginner (who got a new bike for Christmas!) or a keen cyclist, the fantastic Prudential RideLondon-Surrey 100 is for all abilities.

This is your last chance to take part in an amazing and exciting 100 mile route through the closed roads of London and the challenging hills of Surrey – this is proper thigh burning stuff!!

Everyone in our team will receive:
1. MS-UK Welcome Pack with loads of different fundraising ideas
2. Lots and lots of support and encouragement!!!
3. MS-UK cycling jersey
4. MS-UK Cheering Point – you’ll hear us before you see us!!

Don’t just listen to me see what two of our cyclists said about last year’s event and riding for MS-UK:

‘We are cyclists and have cycled over 100miles in one hit before, but never on closed roads through London. Ride London is an exciting adventure…whether you are a novice cyclist in training for your first century, or an old hand, the day ticks every box! Wearing the MS-UK vest and being part of their team also gave us extra cheerers on the course and when we saw other riders we gave each other a whoop! Funds raised by opting for a bonded place are used to help families affected by MS to have access to support and guidance. MS is a terrifying indiscriminate disease – it has taken my Mum and Brother away, but never took their fight– and through MS-UK I was able to get the help and support that I needed to keep everything real.’ Kimberley Mangelshot

‘Ride London 100 is the most incredible event to take part in. Covering such a wide area of beautiful scenery and feeling that little bit special that you’re doing the course that the Olympians rode in 2012! Finishing in front of Buckingham Palace is the most amazing feeling ever. I can’t wait to cycle again for MS-UK, their support and encouragement helps through the training and on the day!’ Sarah Russell

Speak to Mark today to get your place before the ballot results and get yourself a guarantee place for the ride!

mark@ms-uk.org
01206 226500

http://www.ms-uk.org/ridelondon

Last chance to take part in MS Society survey

Posted on: January 25 2016

The MS Society have been working on a major piece of research to understand more about the attitudes and opinions of people within the MS Community. The first phase focused on their own members and supporters, and they are now reaching out to the wider community.

We have agreed to partner them in this work, and you may have seen some news about this in our last e-newsletter. Anyway, the deadline for completion is 31 January 2016, so here’s a reminder of where you can take the survey!

Take the survey online now

Please note – if you are also a supporter of the MS Society and have already filled in their questionnaire, you don’t need to also complete this one.

Thanks everyone,

Laura

Marketing Manager, MS-UK

Did you watch Panorama?

Posted on: January 21 2016

On Monday, BBC One aired a Panorama show all about multiple sclerosis. The programme included exclusive access to patients pioneering a crossover cancer treatment that has enabled some people with MS to regain movement.

You can view the show on the BBC One website at http://www.bbc.co.uk/programmes/b06ss17g.

Twitter was ablaze throughout the evening of the show, with people commenting about it positively and negatively. At MS-UK, we saw people who felt the show was really hopeful, and some who simply didn’t like the use of the word ‘sufferer’.

The show definitely got the nation talking about multiple sclerosis, but how did it make you feel? In this blog we get Kahn’s view on the programme, and please do leave us a comment below saying what you thought about it!

Kahn’s view on the programme, and what it meant to him…

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Kahn, Editor of New Pathways

Monday seemed to be a day when people felt compelled to ask if I was going to watch Panorama’s look at a new multiple sclerosis treatment being trialled in Sheffield.

I wasn’t going to. I was off to watch Room.

Monday evening and Tuesday morning, the same people again Tweeted and Facebooked me to ask if I’d seen the Panorama programme.

I hadn’t. I’d watched Room.

Enjoyed it too.

Which is more than can be said for the Panorama programme, which I sat down to watch on Tuesday as I had my lunch.

It being a programme by the BBC and Panorama, I was expecting a fair, balanced, honest look at a potential new treatment that could help people but comes with risks given that it involves stem cell transplants and chemotherapy.

Sadly, what I got instead was some kind of tabloid sensationalism, full of ‘sufferers’, ‘miracle’ cures and people with MS whose lives were over the minute they were diagnosed.

Now I know diagnosis is tough – it’s taken me years to get my head round it. But at no point did I think my life was over. It had just changed. Radically, sure, but still only changed. I was still alive.

And I know many fellow MSers who would say the same.

Panorama gave me the impression we’re all marathon runners and snowboarders whose reason for living has been stripped away.

Personally I couldn’t snowboard before I was diagnosed, never mind after…

So what message did that send out to people newly diagnosed? Or people, like me, who are doing OK at the moment?

Yes, I know Panorama aren’t there to do a PR piece for living well with MS. But they shouldn’t be there to scare the socks off you.

I like my socks. Leave them on.

And what about the side effects of chemo? Did I miss that bit? Or does everyone feel great straight away, if a smidge bald?

And what about all the other unanswered questions? Is the trial still open? Can it be carried out anywhere else?

And crucially, who did it not work for? What happened to the people whose immune system wasn’t rebooted?

I know they only had half an hour, and could only cover a certain amount, but the 30 minutes we got served left me feeling disappointed.

Disappointed that only the extremes of the condition were highlighted. Disappointed that a more sensationalist approach was favoured. Disappointed that all the good work the MS charities en masse do in promoting a positive approach was being systematically undone.

Maybe it wasn’t. Maybe people took something positive from the show and it was just me in a bad mood (hey, could happen…).

Part of me hopes so.

Let me know what you think by commenting below. I would love to know if you found watching the show difficult, like I did, or if you took it completely a different way?

And if I get answers to my questions, I’ll let you know.

Kahn

Editor, New Pathways

Affected by the show?

You can contact the MS-UK Helpline to discuss anything related to multiple sclerosis. Just visit our website to live chat with us, or call 0800 783 0518.

Hello and Goodbye

Posted on: January 21 2016

 

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Tracy Wellsted MS-UK’s new Head of Fundraising

In today’s blog, we give a very warm welcome to our new Head of Fundraising, Tracy Wellsted – welcome Tracy!

We say farewell to Abi Crawford who has been at MS-UK for nearly 11 years and has predominantly looked after our London Marathon team for the majority of that time.

Abi said ‘It has been an incredible time at MS-UK and very rewarding to see how the charity has grown and developed its services to help anyone affected by multiple sclerosis. I cannot thank our fantastic fundraisers enough for their unswerving support and dedication to raising funds to help ensure we can maintain those services. And a special thank you to all those who have volunteered at our events – we couldn’t have done it without you! Whilst I am hanging up my fundraising boots, I’m not quite ready to hang up the running shoes just yet, I think I may have one more marathon left in me so watch this space…#Abisaidso’

Tracy, our new Head of Fundraising said ‘I’m really excited to be joining the MS-UK team at this time, the services we offer to people affected by multiple sclerosis are second to none. Our unbiased, impartial and non-judgemental approach to our work is a key strength and the fact that we put people affected by multiple sclerosis at the very centre of our work.

I’ve worked in the charity sector for over 20 years and look forward to working with a great team of fundraisers to bring in the income we need to expand and develop our work, and ultimately reach more people affected by this condition.

I’ve got some big shoes to fill but can’t wait to get stuck in!’

Beetle Drive

Posted on: January 19 2016

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On Saturday night I was intrigued and excited to go to my first ever beetle drive fundraiser. I always mention to fundraisers and supporters that a beetle drive is a fun event to organise to raise money, but never really understood how it all worked until Saturday, and all you have to do is draw a beetle to win!

There were 48 people there sitting on 12 tables of four all wanting to be the winner at the end of the evening. My cousin, who was running the event put everyone in pairs which made it more entertaining and near the end of the evening there were 4 pairs with about 10 points between them all fighting to be the champions.

It’s a very easy fundraising event to put on as all you need to do is charge supporters to play at the start of the evening. You start each round by rolling a 6 to get the body of the beetle and then roll for other numbers to get different parts of the beetle’s body.

Overall the night was a great success and I thoroughly enjoyed my evening. There are also many different events you can do to raise money for MS-UK, have a look at our A-Z of fundraising for inspiration.

Mark

Drop-in session at Colchester Library

Posted on: January 18 2016

Kim at Braintree library

 

Following our very successful drop in sessions at Halstead, Braintree and Witham libraries earlier this year, we are going to be on ‘home turf’ by visiting the library in Colchester on 27 January 2016.

Everyone knows their local library; it’s that great place where you borrow books, CD’s and even do some photocopying! But did you know that it is a great community hub? You can find a huge amount of information in there about the town and its locality, so you don’t need to visit just for a book!

For example, did you know that MS-UK are based in the Hythe in Colchester and we have a wellness centre, Josephs Court adjacent to our Head Office?

So if you would like to know more about multiple sclerosis; whether you have a family member with MS or you are undergoing diagnosis at the moment, you work with someone or you yourself have some questions, please ‘drop in’ to see us and have a chat. We don’t always solve everyone’s problems, but that old adage “a problem shared is a problem halved” is very true indeed!

So don’t forget, Colchester Library, 10am to 1pm on Wednesday 27 January 2016 – see you there!

A special Valentine’s Day Myles

Posted on: January 14 2016

dsc_0009.jpgGet your hands on one of our limited edition Valentine’s Day Myles teddy bear; this will be a fantastic gift for that special someone and also knowing that you will be helping to support MS-UK in the process.

All you need to do is to visit our online shop and get your very own Myles for just £5 which includes postage and packaging, with all the profits going to MS-UK.

These are a hot seller so don’t miss your chance to buy one today!


Tell them you love them with a tune

We will also be requesting your favourite Love Songs in the run up to Valentine ’s Day, all you need to do to get your song on our podcast is:

1. Text LURV16 £2 to 70070
2. Send your favourite love song to us on Twitter @MSUK6

Make sure you donate to get a full hour of love songs on the MS-UK podcast and spread the love this Valentine’s Day.

Mark

 

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