News & Events

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.

 

halloweenpost9

 

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.

lastthree

20x5

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.

20x5

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

A MASSIVE ‘THANK YOU!’

 

 

 

 

 

 

 

 

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NMO Patient Group Meeting

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Congratulations to Niamh!

 

 

Pictured here is Niamh, receiving her Radio 1 award with (left to right) ‘Superstar’ Jess Glynne, Niamh’s mother, Suzanne, and BBC Radio 1’s Clara Amfo.

 

Niamh was selected from many, many nominees to receive this prestigious award for her commitment and determination to support others affected by chronic illnesses, and for her work as Paediatric Ambassador to NMO Spectrum-UK.

 

After suffering years of both physical and mental pain brought on by her illness, NMO, and the lack of understanding of its effects among her peers, she decided that no one should suffer alone. Niamh set up the Instagram profile @youngpeople_chronicillnesses, which has developed into a platform for young people from all over the world who suffer chronic illnesses to communicate their experiences and to support each other through the best and the worst of times.  As an ambassador for NMO Spectrum-UK, Niamh has worked wonders in raising awareness of NMO Spectrum Disorders, something that the charity will be eternally grateful for.

 

Who would have thought, when we first set out on the road to raising awareness of this incurable illness, that William and Kate, The Duke and Duchess of Cambridge, would one day be listening intently to Niamh and her story!

 

niamh2

 

Niamh’s efforts and her NMO story have now been shared with millions of people across the UK through BBC Radio 1, BBC Radio Wales and TAG S4C.

 

This is just the beginning for Niamh: she has dealt easily with her sudden stardom, and will continue in her determination to support and inspire other children affected by NMO and Chronic Illnesses in the present and in the years to come.

 

niamh3

 

 

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Chugai Pharma Adolescent Trial

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2016 Halloween Ball Media Pack

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Magazine Launch

frontcoverimagejpeg

 

 

 

 

&

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.

Posted in Uncategorized

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