News and Events
NMO Annual Patient Meeting
Friday 12th and Saturday 13th April 2019
Venue – Aston Conference Centre, Aston University, Birmingham B4 7ET
The National NMO Service would like to invite you to the NMO annual information day.
NMOSD is a rare condition and many of you may feel isolated and in need of some information. Our information day is aimed at answering a lot of the questions you may have with workshops and talks that focus on living with NMO.
Full details of programme to follow
- Q&A sessions with our expert panel
- To gain information on latest research in NMO
- To meet others with NMO
- To attend useful workshops
- Information and advice from the team
There will be an informal meeting and buffet to meet others on
Friday 12 April from 6pm if you would like to join us
Please contact Jackie Thomas, NMO Coordinator on Telephone 0151 556 3532 (Monday to Wednesday)
or by email: email@example.com
as soon as possible as places are limited.
We look forward to meeting you and family members
If you wish to attend both days – you can stay overnight at Aston Conference Centre. If you require accommodation please contact them directly on 0121 204 4300 or alternatively you can book online
This event is kindly funded by NMO SPECTRUM-UK
Reprinted with the kind permission of The Saddleworth Independent.
A BLUES musician has raised even more funds for charity – despite some of his performers not making it to the gig after breaking down on the other side of Manchester!
John Loydon, known as JSL, retired from mainstream music after being diagnosed with rare neurological illness NMO in 2003.
Previously he has put on gigs at The Granby and The Hare and Hounds in Uppermill and TOAST in Delph to raise funds for charity NMO Spectrum UK. His latest gig at TOAST in July raised another £137 for the cause – but it was not without its hiccups along the way.
John had pulled together a roadshow of seasoned entertainers for the evening, many of whom had not even met before the event. And they all still didn’t get the chance to play together as the performers from the other side of Manchester suffered a van break down on the way. But there were still individual performances by guitar/vocalist Stephen Morris, veteran Blues harmonica player Malcolm Mills, and the Diggle diddley bow exponent Jim Gradwell. Then JSL performed as part of a 7-piece scratch Blues band, The Kettle Valley Blues Association.
He said: “As Toast! is a small venue the performers took over the sunny courtyard outside.”
They played to an audience who were generous in their appreciation, their applause and in their donations. It was good fun! It was clear that Toast! owner, Brian Hockenhull enjoyed his role as an audience member and as the host of the event.
“JSL and the other members of The Kettle Valley Blues Association wish to offer Brian their most sincere thanks for his generosity and support for their efforts.”
Find out more about JSL’s music on his website: www.iwokeupthismorning.co.uk where 20 per cent of sales goes to NMO Spectrum UK.
PICTURE: Jud Hudson – Percussion; Geoff Sidebottom (back row partly obscured) – Percussion; Stephen Morris- guitar and vocals; Debra Bartholomew – slide player’s wife; Yoga teacher, good friend; JSL – vocals and Blues harmonica; Paul ‘Bart’ Bartholomew – slide guitar; Malcolm Mills – Blues harmonica and vocals; John Birkby – keyboard and saxophone
WE ARE HOLDING AN #NmoRaisingAwareness ABBA SING-ALONG/KARAOKE/FANCY DRESS (optional)/RAFFLE/AUCTION/DJ/CHARITY NIGHT 💚
DATE: SATURDAY 24TH NOVEMBER 2018
VENUE: THE ROBIN HOOD PUB
INFO: Free street parking outside venue after 6.30pm
Holiday Inn a few minutes’ walk away
TIME: 7.30PM – 12.00AM
I KNOW MANY OF YOU LIVE A DISTANCE AWAY BUT IF ANYONE WOULD LIKE TO COME ALONG AND SUPPORT NMO SPECTRUM–UK, PLEASE FEEL FREE TO JOIN US ON THE NIGHT. 💚
If you require further information please do not hesitate to contact me, or email Tony firstname.lastname@example.org
Let’s all get behind Sandi and Tia-Grace. Bring out your Dancing Queen, as Knowing Me, Knowing You, this will be a fantastic night out and all in a good cause. It will be a night of fun, frolics and fundraising, and for those who would like to make a night of it, remember there is a Holiday Inn just a few minutes’ walk away.
Back Row – Mark Ferguson, Cat Clarke, Idris Ravat. Middle Row – Kiran Samra, Nikki Fenton, Ben Heywood, Rowena Daley, Lucy Brookes, Grace Briers, Jameela Quadri. Front Row – Kevin O’Neill, Lee Jagger, Adam, Brogan Hartny-Mills, Harvy Sohal
Our pack turned Welsh Road Farm in Warwickshire into a muddy sea of green, while raising much-needed funds and awareness of NMOSD. Kevin and the pack are pictured deep into their second Wolf Run of the year, with a total raised to date of just on £1200.00, and with the prospect of one more to come.
With the added difficulty of a cold early November morning, Saturday 3rd November 2018 will see our pack take to the woods and swamps for the final leg of a fantastic fundraising year for Kevin and the Unity Trust Back Pack of Wolf Runners.
Every single person who took part to support their own worthy causes couldn’t help but comment on what they were calling the ‘No More’ Crew, as our pack made the event’s big screen in glorious green. They started together and they finished together in true NMO SPECTRUM-UK spirit.
The Video below is the event’s big screen, as our trusty Wolf Pack prepares to take on the elements,
“The Sea of Green, by all seen.”
To Kevin and the whole of the pack, NMO SPECTRUM-UK and the whole of our community would like to express our sincere appreciation for all of your efforts.
Once again NMO’s Belle of the Ball hits golden heights in our fundraising campaign to fight NMOSD. Pictured front and centre, where she has always been as an ambassador of NMO SPECTRUM-UK, Annabelle Moult is pictured alongside Trish Hughes-McCann, Trustee and founder of the charity, and Tony Hughes-McCann, head cook, cleaner and bottle washer – otherwise known as CEO.
As is usual with events such as ours, there are so many people to thank for their kind help and support, all of whom, obviously, contribute to making our special night possible. In most cases there are far too many to mention everyone in person so, on behalf of NMO SPECTRUM-UK, its Trustees and Ambassadors, we would like to thank everyone who donated to the charity raffle and auction.
We would like to extend a special thank you to our Event Sponsor, New Era Cap Company, for all of their help. Events such as ours rely on finding a company kind enough to become main sponsor, so….
When it comes to long term support for our aims and goals, alongside New Era, it would be remiss of us not to mention Mr Andy Martin, Vice President and Managing Director of MIQ Logistics Limited. For the third year running Andy and MIQ sponsored our Golden Ticket with a holiday to the value of £1000. It’s truly hard to put into words just how important the continuity of Andy’s support is to a small charity like ours, and how much it means to us. Once again from the bottom of our hearts…
We must be doing something right as, for the second year running, Darren Bedding, who has now become our resident photographer not only donated his services for the night but chipped in with one of the main auction prizes: a £500 photo shoot with a canvas along with an ongoing offer which will be publicised on our Facebook group NMO SPECTRUM Community in the near future.
It’s not unusual to be thrown a curve ball when organising an event as important as our Summer Ball, but I don’t mind admitting that finding out in the same week as the event that your star performer, Everis, had been taken ill and would be unable to perform, threw me into a slight panic. But I have to say that the replacement Everis found for us was absolutely fantastic, It has to be said that for a performer of his ability to step in at such short notice, and for travel expenses only, was truly amazing. I take my hat off to Mr Weston Foster who, quite literally, had everyone dancing on the floor, at the tables, and in the aisles.
Weston, I think every single person who attended is richer for the experience. Thank you from everyone, and I mean everyone associated with NMO SPECTRUM-UK.
The night itself, just like its organiser, commenced with that touch of class, courtesy of Jane Coulcher, an accomplished Harpist who plucked her way into our hearts during our bubbles reception which carried on through to the main hall. Not the harp, just the bubbles that is! Once we’d all settled in we were again treated to a beautiful meal to the exacting standards of The Oxford Belfry Hotel. Our compliments to the Head Chef and the staff, for whom nothing was too much trouble – with a special thank you to our events manager at the hotel, Tom, who conducted the evening as if it were the Royal Philharmonic Orchestra.
We didn’t have the luxury of an events management company this year, so all of the décor was down to Trish, Belle, Danny, family and friends, who captured the Golden & Green theme to perfection with balloons, napkins, and green petals strewn across a golden table runner. It really looked perfect.
‘Perfect’, ‘seamless’, are not words we’d use to describe the raffle, as between my Trish and Belle, The Two Ronnesses sprang to mind – but we got there in the end with fits of laughter typical of our big nights.
We were in shock at the auction when ‘The Sixth Beatle’ turned up with a one-off Stratocaster guitar donated by famous Blues singer and Trustee John S Loydon, and sang his way through the auction items.
At this point in proceedings it was becoming obvious that the evening – as if there was any doubt in the first place – was developing into a magnificent team success.
Another member of our team who unfortunately could not be with us, owing to the fact that her husband Fred was receiving radiation boosts, is the artist responsible for this beautiful painting in oils, ‘The Ballerinas’, Maz Cason, herself a sufferer of NMOSD and the inspiration behind The Art of NMO, which can be viewed via the website.
Thank you Maz, we are all thinking of you both at this time.
By the time we reached the final item, the cottage stay in Scotland secured with a winning bid by Gavin Hazeldine who, by the way, went above and beyond the call in his support for our charity, it was success on a plate. All the worries and long hours in the organising disappeared into the box marked, ‘Perfect!’…
One last raffle draw and this was the big one – the MIQ Golden ticket – the winner of which would be hot footing it to a travel agent come Monday, armed with £1000 worth of holiday vouchers. This was the prize that grabbed everyone’s attention including mine, as my dreams of two weeks in Blackpool (not) were only one bit of good luck away.
TO OUR LUCKY WINNER
AMBER LOU BROWN
Once again we managed to put on something special to support the work we do in funding ethical research and supporting initiatives such as NMO on Tour, where our magnificent Advanced Nurse Practitioners and their teams tour the country from Scotland to Southampton with meetings to bring people affected by NMOSD together for advice and support, and to meet others affected by this terrible illness.
We thank you all for all of your help and support in making our evening such a tremendous success and truly hope to see you all again when the time is right.
The last mention, quite rightly, should go to the inspiration of our series of events in Oxfordshire from our Hog Roast at Thame football club, the first major event for our charity, to the Brilliant Halloween Ball and now our Spectacular Golden & Green Summer Ball.
We have to say, as a charity, that to have an ambassador like Annabelle, who raises funds exclusively for NMO SPECTRUM-UK, is like a breath of fresh air. Without the work put in by Belle and our team of Ambassadors we quite simply wouldn’t be able to fund ethical research in the UK, so we add the thanks of the medical and research staff at both Walton and Oxford to ours at NMO SPECTRUM-UK.
NMO SPECTRUM-UK is proud to announce that this fantastic evening raised a grand total of £8,511.
‘Well Done To All!’
Flowers themselves were certainly not enough, but the feeling and admiration for such a powerful young lady with which they were given, will be echoed by anyone who has had the privilege of knowing her.
“THANK YOU SO, SO MUCH BELLE!”
Please follow below link to view our gallery. To obtain your photograph, please contact Darren via email.
To help raise more money for this great cause, you can apply for some of our amazing £175 family gift experience vouchers.
We donate these vouchers free of charge for fundraisers to sell for £20, so let us help you raise more money.
Simply message us with your address and your fundraising event along with how many vouchers you would like and we will post them them or if local deliver to you. If you are running an event we will also include our tips on how to use them at the event.
Darren Bedding Photography.
Chugai (a Japanese company that is part of the Roche group and has an office in London with around 40 staff) has been working in the field of NMO for several years now. We started Phase 3 clinical trials back in 2013, researching our study drug SA237 (now known as Satralizumab).
There are many rules and regulations to follow to make sure that clinical trials are completed safely and to the highest standard. This means A LOT of paper! With so much often tedious paperwork, it is very easy to forget why we do what we do and that the ultimate result will hopefully one day benefit patients. We had arranged a summer staff meeting to remind all our staff in the UK that the patient is the core of everything we do and invited Tia Grace and Sandie, her mum, to hear first-hand what it is like to live with NMO. Both Tia Grace and Sandie gave a brave and frank insight into this dreadful and life changing disease. Our staff found the discussion inspirational and motivating and we returned to tackling our paper work with renewed vigour. As one staff member so aptly stated “It is rewarding to think that in some small way what I do may one day help to find a solution for patients like Tia Grace”.
Thank you Tia Grace and Sandie for inspiring us.
Date of Prep: July 2018 CPE/NPR/0010
It’s time to dust off the DJ or search for the perfect ball gown, as preparations for the NMO SPECTRUM-UK Summer Ball 2018 are now in full swing.
Our aim is an evening to remember, in the exclusive setting of The Q Hotels, Oxford Belfry, Thame, Oxfordshire.
Enjoy our fine dining experience, and dance the night away in the company of our ‘Southern Soul Sensation’, Everis.
Tickets are available through NMO SPECTRUM-UK at £60.00 per head.
- a 3-course dining experience to the exacting standards of Head Chef, Ronnie Pharoah
- Bubbles Reception
- Charity auction
- An evening of high-class entertainment, starring Everis
- A top DJ, and some surprises guaranteed to enhance your special evening
Please, help us to raise awareness of NMOSD, and essential funds to fight it.
2018 National Conference and Patients Day, Aston Conference, Birmingham. Friday 13th and Saturday 14th April.
Firstly, I would like to extend the thanks of everyone affected by NMOSD to the NMOSD Services staff, at both The Walton Centre and The John Radcliffe Centre, for an excellent conference full of useful information, and for the opportunity to meet and share experiences with friends old and new.
I’m sure you would also join me in thanking the management and staff at Aston Conference for all of their efforts to make our stay as comfortable and purposeful as possible, with a personal mention for Graham, our duty manager, for whom nothing is too much trouble. Thank you!
From the perspective of NMO SPECTRUM-UK, your charity heading up the fight against NMOSD, there was so, so, much work that went into our part of the weekend. There was planning for our AGM, and preparing for the presentation of the cheque for research through the funds raised by you all, along with the release of our second edition of your charity’s magazine.
In my mind, personally, I thought the presentation of the jumbo cheque would be the lasting memory of this year’s conference. That was until the get-together on the Friday evening which, just like my first-ever conference at the Voluntary Services Centre in Birmingham in 2013, truly brought home to me the raw emotion associated with the diagnosis of a rare illness such as NMOSD, and the feeling of being alone in a world that knew next to nothing about your condition. We have moved on in leaps and bounds since the bad old days of misdiagnosis as MS. But it was deeply moving to witness the courage of the newcomers to our family as they talked openly, with many tears, of their worlds falling apart upon diagnosis, with no idea of where to turn or who to speak to, or just what to say.
Well, well done to you all for finding the strength to speak out loudly and openly to your newly-acquired family and, on behalf of everyone, I commend your courage. That night will stick with me for many, many years to come.
Each year our charity rewards the efforts of our fundraisers. Once again you all exceeded expectations, not only with the funds raised, but in the lengths that you, our fundraisers, went to in the name of research.
NMO SPECTRUM-UK would like to thank each and every one of you who took the time and effort to organise an event, take part, or to donate through our JustGiving page. Without you none of this would be possible.
The recipients of this year’s awards went, in more ways than one, that extra mile: none more so than our joint fundraiser of the year, the truly amazing
Tara took on the searing heat of the Jordanian desert to run 5 marathons in five days, a staggering 260km. A fabulous effort, Tara, and your award is more than deserved. Thank you from the whole of our community.
The next of our joint fundraisers of the year, Gareth Eggle, is a vital part of our team in more ways than one. Gareth has spent much of the past year in the Green of NMO, either on the golf course with his marathon 72 holes in one day, or pounding the streets of Bristol in The Bristol Half Marathon. In fact the whole of the Eggle family, inspired by daughter Saffie, have been amazing in their personal efforts to support our aims and goals.
Saffie herself, pictured below with her Dad, Gareth, was also quite-rightly recognised for her inspirational work, as she collected the award for ‘Inspirational Young Star of the Year 2018’ Saffie, a member of our family who refuses to allow NMOSD to get in the way of her fundraising or her imagination, designed and hand-made our NMOSD memory stones. The stones were presented to those who attended an event arranged by Claire, Saffie’s mum.
Details of the event can be found here.
Saffie, you are an inspirational young star and truly deserve both the award and the recognition.
“Well done to you all!”
NMO SPECTRUM-UK takes the opportunity each year at The National Conference & Patients Day, to recognise the tremendous work of our NHS team and each year presents the ‘NMO SPECTRUM-UK Order of Merit’. This year’s worthy recipients had a little trick played upon them as they were invited to present the awards, unaware it was actually themselves they were presenting them to!
“Congratulations, Rosie & Kerry!”
Every single person who has attended either Walton or Oxford will, of course, know either Rosie or Kerry and will know as we do that their tireless efforts on your behalf, to both support and comfort, are more than worthy of this award.
“Well done to both of you!”
From the very first moment I met my beautiful wife Trish, it was her dream and ambition to establish a charity that would both support sufferers of NMOSD, and research into a possible cure. It has to be said that it’s been a long and, at times, a difficult journey to get to where we are today, with the help of our trustees and ambassadors. Without doubt there is still some way to go but we, as a community, are proud to have reached the point where we can give direct financial support to research.
Pictured below is the moment that one of our ambitions was finally achieved, as NMO SPECTRUM-UK presented our jumbo cheque to NMO Fellow Dr Saif Huda to fund a vital research project.
While you are reading this, please take the time to give yourself a well-deserved pat on the back, as none of this would be possible without,
“THANK YOU, ONE AND ALL.”
NMO SPECTRUM-UK praises the efforts of our very own Kevin O’Neill of Unity Trust Bank,
who, along with his friend Lee Jagger, howled at the moon in their first Wolf Run: two hours of torturing obstacles in the name of NMOSD.
Kevin is pictured on the left. Not content with raising much-needed funds, throughout their gruelling ordeal he made a point of speaking with all fellow competitors and marshals, explaining all about NMOSD.
I can only imagine communicating, waist-deep in freezing muddy water, with obstacles behind and ahead. Well done to the two of you. Raising awareness of NMOSD, as we all fully understand, is of vital importance.
As a community, we can, without doubt, ‘Trust’ in Kevin and Lee.
The story doesn’t finish here. Not only have they signed up for the Summer Wolf Run, again to support NMO SPECTRUM-UK, but they have managed to convince another 15 colleagues to join them for the Autumn Wolf Run. I for one can’t wait to see the photographs with 17 ‘NoMOre Suffering Alone’ T-Shirts turning the muddy waters NMO green.
Please keep a check on the JustGiving page, through our website www.nmouk.org, for further details of Kevin’s efforts on behalf of all of us. Or, if you feel that you could be the 18th, 19th, or 20th member of our Wolf Run Pack, then don’t be hiding in the woods: email Tony, email@example.com.
Keep up the fight, Kevin and Lee, and on behalf of our whole community we wish to thank you from the bottom of our hearts.