News & Events

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!

 

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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.

 

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Chugai Pharma Adolescent Trial

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2016 Halloween Ball Media Pack

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Magazine Launch

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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 Group Meeting

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NMO Patient Group Meeting

Jurys Inn, Edinburgh
Wednesday 28th September – 19.00 hrs

NMO is a rare condition and many of you may feel isolated.
Would you be interested in meeting others going through similar experiences to you?

* To gain information on latest research happening at Walton Centre?
* To share advice/experiences?
* To make new friends?
* Information on NMO Charity
* Information from NMO Study day held May 2016 in Birmingham

Them come along to an informal meeting and buffet at the Jurys Inn located near Edinburgh Station.

Address
Jurys Inn Hotel, Edinburgh
43 Jeffrey St, Edinburgh EH1 1DH

Please contact Kerry Much NMO Nurse Practitioner
0151 529 8357 by 12th September 2016 to confirm your attendance.

The Patient meeting will be held the evening before the Clinic at the Anne Rowling, Centre, Edinburgh, on Thursday 29th September.

We look forward to meeting you all.

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May 2016 Aston Conference Birmingham

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2016 NMO Information Day

20/21st May 2016 Aston Conference Birmingham

 

For all those who, unfortunately, were unable to attend this year’s Information Day we have to say that you missed, probably, the best so far. This is thanks in no short measure to the hours upon hours of hard work and planning put in by all those involved – with special thanks going to Annaliza Rye (The John Radcliffe Centre, Oxford) and Jackie Thomas (The Walton Centre, Liverpool). I’m sure everyone would like to add their sincere THANK YOUs for a job really well done.

 

 

Annaliza                              Jackie-Final

Annaliza Rye                                                               Jackie Thomas

 

 

We held our charity’s Annual General Meeting at the Information Day and although it was not concluded, owing to time restraints, we did manage to put in place a strategy for our future plans and development.  Although all concerned fully understand that we have a long and somewhat difficult road ahead of us, great strides forward were made.

 

As a result of the trustees inviting certain individuals to come on board in a more official capacity, we are proud to announce that Dr Anu Jacob (Walton) and Dr Jackie Palace (Oxford) have consented to become the Patrons of NMO Spectrum UK. The work of the trustees and appointed agents to guarantee the maximum effort in pursuit of our joint aims and goals will be bolstered through their valuable input.

 

 

Dr-Anu                              Dr-Jackie-Palace

Dr Anu Jacob                                                             Dr Jackie Palace

 

 

Without doubt, both individually and as a part of our ever-growing team, all of the above will be worth their weight in gold as we strive to raise both awareness and funds to fight NMO Spectrum Disorders.

 

 

 

Coleen-Final Colleen Carney Paterson

Elected Ambassador to the North West

 

 

 

 

 

 

 

 

AnnabelleAnnabelle Moult

Elected Ambassador to the South East

 

 

 

 

 

 

 

 

GraceGrace Hobson

Elected Ambassador to the Midlands.

 

 

 

 

 

 

 

 

EverisEveris Pellius

Elected Ambassador to Greater London.

 

 

 

 

 

 

 

 

Jane Cooper

Elected Ambassador to Staffordshire

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

NiamhNiamh Seren Wedlake

Elected Paediatric Ambassador UK

 

 

 

 

 

 

 

 

 

Without doubt, both individually and as a part of our ever-growing team, all of the above will be worth their weight in gold as we strive to raise both awareness and funds to fight NMO Spectrum Disorders. It is of paramount importance that we, as a charity, recognise the achievements of our fundraisers. Without them we just could not continue in our efforts to make misdiagnosis of NMO a thing of the past, and to have its symptoms  recognised by the majority of the medical profession. This, however, is only one of the aims we have set ourselves as we haven’t lost sight  of the fact that, eventually, it’s the cure we are after – and we never will!

 

 

Giving that recognition has now become a regular feature at our Conference and Information Day, as NMO Spectrum UK and NMO-UK The Rare Illness Research Foundation CIC take great pride in recognising these contributions by holding  our annual Awards Ceremony.
Unfortunately, this year’s recipients were in the main, either off climbing Mount Everest with one hand tied behind their backs for a worthy cause, or sunning themselves on a well-deserved holiday. It was fortunate that we had some  worthy stand-ins to accept the awards on their behalf.

 

 

The first award for NMO Fundraiser of the Year went Mr Kevin Beadell who took on numerous challenges, including a 174-mile bike ride, marathons, a half marathon and a children’s fun mile, to raise a staggering figure in memory of his late father, Terry, who lost his battle against NMO in December 2013. Kevin’s award was received on his behalf by last year’s Fundraiser of the Year, Mr John S Loydon. John was away in Canada at the time of last year’s ceremony, so it seemed fitting that John would receive the award on Kevin’s behalf. A big ‘thank you’ to John and very special NMO ‘congratulations’ to Kevin, who has now received his award.  He sends his thanks to everyone involved with our charity. The thanks belong to Kevin  and to his team for their fantastic efforts on our behalf.

 

Trish-and-John

 

The next award goes to a young gentleman who is no stranger to our News and Events page for his unbelievable endurance event when, after being inspired by Tia-Grace Ray, Mr John Kane took on The Nuclear Oblivion Assault Course, comprising 26 miles of pain over 175 Army Standard obstacles, which he began at 9 in the morning, and he crossed the finish line at 5 in the afternoon When asked why he put himself through such torture he gave a simple yet profound answer: “Because Tia-Grace was waiting for me at the finish line.” John Kane is not only Tia-Grace’s hero, but will go down in our Charity’s history as one of ours too. Congratulations, John!

As John was away supporting one of his many worthy causes, who better to receive the award on his behalf, than Sandie, Tia-Grace’s mother? She is a stalwart in our continuing battle against this terrible disease.

 

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Our final award for Fundraiser of the Year took us back, more or less, to the beginning.  The experience gained at JSL’s 2015 Blues Gig, and the months of non-stop work that a certain young lady put into arranging our NMO Spectrum UK Summer Ball at Thame in Oxfordshire, helped us, as an organisation, to gain the most valuable lessons in event co-ordination. Each event raised a  substantial sum, giving us extra confidence and the financial support needed to put the wheels in motion for future events. The young lady in question, our very own Annabelle Moult,  was on a well-deserved holiday with her husband, Danny. Truly, we hope Annabelle got the relaxation she deserved as  it’s now all hands to the pump, planning our main event for 2016, the NMO Spectrum UK Halloween Masquerade Ball at The Oxford Belfry on Saturday 29th October 2016. Details will be released via Facebook and our News and Events page very soon. As Annabelle could not accept her award in person it gave us the opportunity to introduce one of our new additions to the team: Mr Everis Pellius, who has taken on the role of Ambassador. It is fitting that Everis should have received the award on Annabelle’s behalf, as he has kindly offered to be our star act at Annabelle’s main event and to perform for us free of charge. This is as well as donating all of the profits from his recently released EEP, ‘Love and Affection’ directly to NMO Spectrum UK.  The EEP is available from our on-line shop.

 

 

EverisandTrish

 

There are times in life when you have to sit up and take notice of the work that goes on behind the scenes by those who give up their time on a voluntary basis. In our opinion this year’s recipient of the NMO Spectrum UK Order of Merit 2016 has done all of that and more. There isn’t a Neuro Consultant in the UK now that isn’t aware of NMO Spectrum Disorder as a condition, thanks to the hundreds of information packs sent out by  our Press and Public Relations Officer, Mr Robert Hunt. Happily, Robert was in attendance to receive his award as we all gave our heartfelt thanks to him for all of his efforts on our behalf. Robert received his award presented by Mrs Patricia Hughes McCann, the founder and CEO of NMO Spectrum UK.

 

 

Trish-and-Robert

 

 

Our final award generated a very emotional response and took its recipient completely by surprise. The award of Young Inspirational Star 2016, went to a young lady who, to be honest, inspires  everyone she meets, including myself and Trish. We spent much of the Information Day being entertained by this beautiful young lady. She was the inspiration behind last year’s winner, Miss Lucy Moore, John Kane’s titanic event, and the support of stars such as Peter Andre. Every single person who meets Tia-Grace falls instantly in love with her and wants to know about the condition that affects her,while also wanting to get involved in the fight against NMO.  She is truly inspiring: Miss Tia-Grace Ray.  “CONGRATULATIONS” to our Inspirational Young Star of 2016.

 

 

Trish-and-Tia

 

 

Undoubtedly, for many reasons, this year’s Information Day will live long in the memory. The presentations made by all involved at both Oxford and Walton, showed the planning, execution and the feeling of real progress being made by our medical teams and left the overwhelming majority with the feeling of Hope.

 

Hope is what we have. And we hope to see you all at next year’s Patient Conference and Information Day.

 

Kindest regards Tony Hughes McCann.

CEO, NMO-UK Rare Illness Research Foundation CIC.

 

 

 

 

 

 

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MIQ Logistics

The Officers and Trustees of NMO Spectrum UK wish to extend a very special thank you to Mr Joe Gill and Team MIQ Logistics for Toughing it out through the Mud and the pain in NMO’s name.

 

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Team MIQ, who are no strangers to supporting the fight against NMO took on the best the muddy hill could offer, Raising close to £2000.00. Our thanks go out to every member of the team, pictured above at the Tough Mudder on Saturday 29th April 2016.

 

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And here we are at the finish, enjoying a well-deserved, refreshing, bottle of chilled water, while planning the next one, LOL. It’s not certain when or where it will be, but once again the whole of the NMO Spectrum team send their thanks to Joe, and Team MIQ.

 

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JSL Mr Blues – on the trail of raising awareness, and yet more funds, with his second blues gig.

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NMO Information Day

NMO Information Day

Friday 20th and Saturday 21st May 2016

Aston Conference Centre, Aston University, Birmingham, B47ET

 

 

 

Programme for Friday 20th May  – NMO Information Day:

 

16.30 – 18.00     Patient Experiences workshop (Facilitator Pamela Franklin)

19.00 – Late        Social with buffet

 

 

Programme for Saturday 21st May  – NMO Information Day:

 

09.30 – 10.00    Registration and coffee

10.00 – 11.30     Presentations:

  • 00 – 10.10       Then & now – 5 years of NMO service (Kerry Mutch/Rosie Gore)
  • 10 – 10.30 AQP4 & MOG antibodies; how we treat them (Dr Jackie Palace)
  • 30 – 10.50 New medications (Dr Anu Jacob)
  • 50 – 11.05 Lab video – journey of your sample (Dr Mark Woodhall)
  • 05 – 11.30 Research – Oxford (Dr George Tackley) Liverpool (Dr Anu Jacob)

11.30 – 12.00     Ask the experts clinical panel (chair Dr Jackie Palace)

12.00 – 12.10     Group photos

12.10 – 13.10     Lunch

13.15 – 14.05     Workshop 1        (session options 1, 2 or 3)

14.10 – 15.00     Workshop 2        (session options 4, 5 or 6)

15.00 – 15.20     Comfort break

15.20 – 15.50     NMO-UK (Tony Hughes & Trish Hughes)

15.50 – 16.00     Summary (Rosie Gore/Kerry Mutch)

 

 

Stands:

Occupational Therapy advice stand – Friday afternoon & Saturday (Kay Day & Rebecca Walsh)

Lycra information stand – Saturday (Liz Betts, Physiotherapist)

NMO information (Kerry Mutch/Rosie Gore/Sandra Reeve)

 

Saturday Afternoon Workshop Sessions:

 

Workshop 1:

 

  • Ways of maintaining independence (Kay Day/Tom Green)

 

  • Healthy living, diet & exercise (Kerry Mutch/Rosie Gore/Nina Eagle)

 

  • What’s new; future treatment and theories (Dr Isabel Leite/Dr Patrick Waters/Dr Mark Woodhall)

 

Workshop 2:

  • Visual Loss → its impact on you and those around you (Val Trimble/Rebecca Walsh)

 

  • Complementary therapies and managing anxiety (Rosie Gore/Nina Eagle)

 

  • Technology and services to promote independence (Hannah Rose/Kerry Mutch/Kay Day)
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