News & Events

Tara’s upcoming ultramarathon in the Jordan dessert

Tara Papworth is running an ultramarathon in the Jordon dessert for NMO-UK.

Let’s get behind this amazing young lady, Tara Papworth.

Without doubt we have had many events organised by individuals who, in support of NMO Spectrum UK, have put themselves through the mill with endurance events that would have some of us running for the hills. This is, without doubt, nothing short of amazing.

Tara is running the 260km ultramarathon in the Jordan desert in October. That’s 6 marathons in 5 days. 2600 football pitches, 17, 333 double decker buses, 10, 833 tennis courts or 78, 078 rulers. It is also just under the driving distance from where she currently lives (Cheltenham) to where she used to live (Horncastle, Lincolnshire).

Lets show our support in whatever way possible for this challenge of challenges and get behind Tara as only our community can.

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Brian’s Highland Walk

Brian’s Highland Walk

Brian ready to go

Tuesday 27th June 2017 (Day 1)

The day had finally arrived, with all the practice done. I planned to make this a long day and, for those of you who may know Caithness, I wanted to get over Berriedale Braes, approximately 30 miles from Thurso.

Leaving Thurso

Heading off at 5am, to take advantage of the long hours of daylight and lack of traffic, I managed about 11 miles before my support team (my partner, Jill) came out to meet me with coffee, bacon and sausages. After a rest it was onwards once more across the remote Causeway Mire, admiring the beautiful Caithness wilderness, and foraging the occasional ripe bramble along the way.

Somewhere in Caithness

Twenty or so miles in, Dunbeath was a natural place to stop for lunch, before setting off again as the showers of rain started.

At around 4pm, Berriedale was directly ahead. If my legs weren’t sore going down the steep hairpin bends at the north side, then by the time I walked up the equally-steep, mile-long southern stretch they certainly were! I managed to soldier on for a few miles and finally stopped to await collection at a layby on the A9.

I was then whisked off, footsore and tired, for a meal, a shower and bed in a local hotel. (Total distance 58km.)  I had feared I would be plagued by midges, but thankfully they had failed to make an appearance that day.

Berriedale Braes

Day 2 (Out of Caithness)

From the first step (as I started from the A9 layby, where I had stopped the previous evening) I could tell my feet were not at all happy about this, but I still managed approximately 6 miles to Helmsdale before a break for breakfast. With the day being that bit warmer, I set off again with plenty of water in my backpack. My worries about the midges were unfounded again, as the breeze seemed to keep them away. I was sure I would pay for this later!

Walking along the coastal A9 road, I found that the traffic was heavier than on the previous day, so more care was needed on the road. There was still plenty of opportunity for admiring the view, and even learning a thing or two about local history along the way.

Local history

By the time 5pm came along, my feet finally said, “No more!” The car park at the end of Golspie’s main street became the end point for Day 2, with another 37km completed.

Day 3 (Golspie to Nigg)

I left Golspie and headed south along the A9. The road widening made dodging traffic much easier as I headed over the Dornoch Bridge to Tain. After a brief break, I headed off to catch the ferry from Nigg over to Cromarty. However, the heavens opened about 10 miles from Nigg and I could feel myself slowing down as I trudged along.

Resisting the offer of a lift from a kind lady a few miles outside Nigg, I took the opportunity to give her a soggy NMO leaflet and explain why I was walking in the downpour, and she seemed genuinely interested. I eventually arrived at Nigg 44km after setting out in the morning. I was just in time to see the last ferry leave about two minutes before I got to the jetty!

So there I was, cold wet and miserable, shivering in a bus shelter until Jill came along and, with the heating going full blast in the car, got me to the hotel. A steaming hot shower, a glass of wine and a huge plate of venison stew, and I was ready to sleep.

Strangely, there had been no midges that day either!

Day 4 (Friday , Black Isle to Inverness)

Rather than going back to Nigg for the ferry crossing  to Cromarty, I started Friday from the Cromarty ferry terminal at the other side. So, with a fresh sense of purpose, off I went, heading for Inverness and the finishing line.

Coming out of the village of Cromarty there was a long slow climb of approximately 7km, according to the voice on the MapMyWalk app on my phone. Over the days I had really grown to look forward to her updates each kilometre, and got annoyed if traffic drowned out her voice!

By early afternoon, I arrived at my brother’s house in the village of Avoch (pronounced Och, as in loch). After a cuppa I was off again, knowing I had only about 10 miles left. By 4pm, I could finally see Inverness.  A quick descent down the hill and back beside the A9 dual carriageway, and I was almost there.

The bridge into Inverness

The stadium at the other side

I was so pleased to see my mum along with other family members, waiting for me, at the Inverness Caledonian Thistle football stadium. That was 35km for the day and a grand total of 174km or 108miles. Job done, and as a bonus, I had never encountered a single midge the whole way!

Mum at the finish line

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Monika’s Walk

Please take a look at the flyer, below, detailing a sponsored walk that the wonderful Brian Carson is doing to raise money for NMO UK. Details about how to sponsor Brian will be added to our JustGiving page in the near future.

 

 

 

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NMO We’ve Got You Wrapped Up.

NMO Spectrum-UK is proud to announce
NMO AWARENESS WEEK
Friday 31st March To Friday 7th April 2017

We have planned our Awareness Week to coincide with the NMO National Conference and Patients’ Day at The Aston Conference Centre, Friday 7th & Saturday 8th April 2017.

We call upon all of our Ambassadors to step up to the plate.  Let’s see what individuals can do to raise awareness in their local communities.

A Facebook challenge has been devised, to commence on Monday 27th February, which we hope will start with our own community and friends, and with a little luck and good planning will then go viral.  Please keep up to date through our FaceBook community page and our website, www.nmo-ukresearchfoundation.org

I  shall be the first to make a fool of myself, and then challenge three of my friends to take on the challenge.  If the challenge is accepted, then each of the three participants will make a £10.00 donation to the charity through the JustGiving page, “We’ve got you wrapped up”.  Then they can   challenge three of their friends to do the same.

No clues are available as yet, but there will be prizes for the fastest time, most original setting and of course the funniest.  All recordings of the challenge will go onto our Facebook community page and our website so that on those days when life seems to be a bit of a struggle, we can have a little laugh at ourselves and our friends, and hopefully bring that smile back.

I have no doubt that our community, and beyond, will be very supportive, both raising awareness and making people smile at the same time.

The first challenge, of course, is to you the reader.  Is there something that you can do in your community to raise awareness of NMO?  Have you had ideas that have not yet been acted on?  Well, now is the time to revisit them – and if you need any support, we are here to help in any way possible.

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Annual Information Day

NMO Information Day

Friday 7 April and Saturday 8 April 2017

Venue – Aston Conference Centre, Aston University Birmingham B4 7ET

NMO Day 2013

Provisional Programme for Friday 7 April  – NMO Information Day:

 

16.30 – 18.00    Patient Experiences workshop

19.00 – Late     Social with buffet

 

Provisional Programme for Saturday 8 April  – NMO Information Day:

 

09.30 – 10.00        Registration and coffee

10.00 – 11.30      Presentations:

 

  • 10.00 – 10.15        Introduction What is happening in NMO World –Dr Jackie Palace
  • 10.15 – 10.30    Clinical research update Walton Centre –Dr Dan Whittam
  • 10.30 – 10.45    Clinical research update John Radcliffe –Dr Silvia Messina
  • 10.45 – 11.00    Lab video – journey of your blood sample – Dr Mark Woodhall

 

11.00 – 11.10    Group photos

11.10 – 12.00       Workshop 1       (session options 1, 2 or 3)

12.00  – 13.00       Lunch

13.00  – 14.00      Workshop 2     (session options 4, 5 or 6)

14.00 – 14.50       Workshop 3        (session options 7, 8 or 9)

14.50 – 15.10       Comfort break

15.10 – 15.40       Ask the experts’ clinical panel – Chair Dr Anu Jacob

15.40 – 16.00      NMO-UK Tony Hughes & Trish Hughes

16.00               Summary and close – Rosie Gore/Kerry Mutch

 

Stands:

Occupational Therapy advice stand – Friday afternoon & Saturday Kay Day

NMO information Rosie Everett /Sam Linaker/ Kerry Mutch/Sandra Reeve

 

Saturday Afternoon Workshop Sessions: Please choose one from each section

 

Workshop 1:

 

  1. Coping mechanisms and resilience (Rosie Everett/Kay Day)

 

  1. Living with and understanding neuropathic pain (Sandra Reeves and Dr Jane)

 

  1. Memory and Cognition effects in NMO (Dr Perry Moore/Kerry Mutch)

 

Workshop 2:

 

  1. Coping mechanisms and resilience (Rosie Everett/Kay Day)

 

  1. Impact of bladder bowels and sexual dysfunction (Sam Linaker/Kerry Mutch)

 

  1. What’s new; future treatment and theories (Dr Jackie Palace /Dr Isabel Leite/Dr Anu Jacob/ Dr Patrick Waters/Dr Mark Woodhall)

 

Workshop 3:

 

  1. Living with and understanding neuropathic pain (Sandra Reeves and Dr Jane)

 

  1. Impact of bladder bowels and sexual dysfunction (Sam Linaker/Kerry Mutch)

 

  1. Maintaining Safety in the home (Kay Day/Rosie Everett)

 

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NMO NEEDS YOU

NMONEEDSYOU

 

ATTENTION

 

TO ALL RUNNERS, JOGGERS AND TOUGH MUDDERS.

 

NMO-UK Rare Illness Research Foundation, in conjunction with NMO Spectrum-UK, has secured charity places through

TheGreatRunCompany

in many of their premier fundraising runs and marathons.

 

 

“OUR CHARITY NEEDS YOU!”

 

 

NMO-UK will fund all entries and supply a fundraising pack, along with the charity’s T-Shirt, for each entrant.
Although, unfortunately, we were unable to secure the charity package for the Virgin London Marathon or The Great North Run for this year we will also fund any person who enters through the ballot to run for the cure.

 

 

Please visit link.
http://charity.greatrun.org/CMSContent/Attachments/EN/Great-Run-2017-Charity-Prospectus.pdf

 

nmo runs for the cure

 

Please, please, please, share this with your friends and ask them to share it with theirs. We need as many runners as possible.

 

All applications to go through NMO-UK.

 

NMO ON TOUR: LET’S RUN FOR THE CURE!

 

 

Contact Tony Hughes-McCann
info@nmo-ukresearchfoundation.org

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Magazine Launch

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&

spectrum

are proud to announce the launch of our first official magazine, aimed at raising awareness of NMO whilst promoting partnerships between the private sector, the NMO community and the NHS.

 

As a community, we need to understand that without the support of our advertisers in the magazine, much of the valuable work of both the CIC (NMO-UK RARE ILLNESS RESEARCH FOUNDATION) and The Charity (NMO SPECTRUM-UK) would be impossible.

 

We ask that you return the favour by using the services provided by our kind supporters, when required.  We intend to produce upwards of 10,000 copies per annum, which will be permanently displayed in NHS Centres, Hospitals, GP Surgery waiting rooms, and as many places of public interest as possible.

 

 

  Our aim is to ensure that by providing as much information as possible about NMO Spectrum Disorders, throughout the NHS and the general public, we can raise much needed awareness of the symptoms of NMO in the hope that there will benomore

As we strive towards our mutual goal:  THE CURE.

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NMO Patient Meeting – Wakefield

NMO Patient Meeting Flyer

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Halloween Ball 2016

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Once again Annabelle Moult has pulled out all the stops in support of NMO Spectrum-UK. Without doubt, this year’s main event was the biggest, best and most enjoyable of all. We must say that Annabelle has worked tirelessly for over a year since our Summer Ball to turn The Halloween Masquerade Ball from a pipe dream into stunning reality. As well as, obviously, raising awareness and funds for our cause, there wasn’t a single person that didn’t enjoy every aspect of the evening to the full. On behalf of our whole team we should like to extend a sincere ‘Thank you’ to Belle and her husband, Danny.

Annabelle, who was recently appointed as NMO Spectrum-UK Ambassador to the South East, left no stone unturned when it came to putting bums on seats, collecting prizes and coordinating with both the hotel and events company, Team Spirit, who turned a normal function room into a scarefest of Halloween delight!

We were joined by guests from across the country, and every single person there to support the fight against NMO Spectrum Disorders, so on behalf of the Trustees and Ambassadors we should like to take this opportunity to thank you all.

 

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The glitz and glamour came to town to make this a night of nights with smiles all round from, (left to right) Grace Hobson NMO Ambassador, Kerry Mutch NMO Advanced Nurse Practitioner at The Walton Centre Liverpool, Ambassador Jane Cooper, and Rosie Everett NMO Advanced Nurse Practitioner at The John Radcliffe Centre Oxford.  Now that’s what we call a knees up!

NMO Spectrum-UK would like to extend a special ‘Thank you’ to everyone who was involved in our golden-ticket for a £1000 Thomas Cook holiday voucher again this year, with special thanks going to its sponsor Andy Martin of miqlogoPictured below are Everis, Annabelle and our lucky winner, Lucy O’Hare, with smiles all round – as Lucy can already see the sun, sea and sand with her voucher for a Grand.

 

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My wife, and founder of NMO Spectrum-UK, Trish, couldn’t help but see the funny side of a masked man asking the guests to give generously prior to our auction.  From the bottom of our hearts, we thank you all as you did just that, with a total from bids on the night alone of £3490.00.

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We should like to extend a special NMO ‘Thank you’ to Hannah Austin and The Aylesbury Vale Youth Theatre who opened the evening with a superb rendition of ‘Thriller’.  It was obvious on the night that much effort had gone into the rehearsal and makeup by this group of young thespians who volunteered their time and services to our appeal.  We truly couldn’t have wished for a better start, and for that we are forever in your debt.

 

“THANK YOU”, TO YOU ALL!

youththeatre

 turned on the style as our Southern Soul Sensation, and not only filled the dance floor but had us dancing in the aisles with selected tracks from his EEP ‘Love and Affection’, which is available through our online shop at www.nmo-ukresearchfoundation.org or through

www.everispelliusmusic.com.  As well as donating his time and superb voice to complete a perfect evening, all of the profits from the EEP are to be donated to NMO Spectrum-UK so without doubt it’s a heartfelt “THANK YOU”.

everisdouble

We should also like to extend a well-deserved ’Thank you’ to Team Spirit Event Management Ltd., of Broadhurst Lane, Greenfield, Oldham, for setting the scene and providing, without doubt, the perfect back drop for a frightnight to remember.  We look forward to working together again in the near future.

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20x5On behalf, of NMO Spectrum UK, my wife, Trish, and I would like to extend our sincere thanks to everyone who either attended or helped in any way to make our evening not only a night to remember for years to come, but our biggest and best fundraiser to date, with a figure of over £14,000 raised.

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20x5And from the whole of the NMO Spectrum-UK team

A MASSIVE ‘THANK YOU!’

 

 

 

 

 

 

 

 

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