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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 be
As we strive towards our mutual goal: THE CURE.
Jurys Inn, Edinburgh
Wednesday 28th September – 19.00 hrs
* 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.
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 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 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.
Elected Ambassador to the North West
Elected Ambassador to the South East
Elected Ambassador to the Midlands.
Elected Ambassador to Greater London.
Jane Cooper
Elected Ambassador to Staffordshire
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.
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.
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.
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.
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.
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.
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.
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.
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.
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:
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:
Workshop 2:
Everis has very kindly agreed to come on board as a vitally important member of our community, inspired by Tia-Grace Ray. His latest soon-to-be-chart-topping release, available through our online shop, Love and Affection EP will be a fantastic boost to our efforts, as all of the profits will go directly to NMO-UK.
Not content with financial support from the EP, Everis has gone that extra mile by agreeing to star and perform, free of charge, at our main event for 2016:
THE NMO SPECTRUM HALLOWEEN MASQUERADE BALL
Saturday 29TH OCTOBER 2016
THE OXFORD BELFRY
THAME
OXFORDSHIRE
Further details of our main event will follow via the News and Events page of our web site, and via our official magazine in due course. Please get behind your charity, and Everis, by purchasing a copy of the EP from our online shop, as anyone with any Soul would see this going into their playlist at Number One!
Without doubt, 2015 was a year to remember, for many reasons. It was full of many positives and, of course, the odd negative – negatives we learnt from, which in some way turned them into positives for the future development of both the charity, NMO SpectrumUK, and the Community Interest Company, NMO UK The Rare Illness Research Foundation. Both Trish and I are so proud of the positives, and of course of all our supporters and partners who made 2015 such an educational and special year.
There are so many people to thank that it really is difficult to know where to start – and even more difficult – exactly where to finish. One thing we do know is that when it comes to this year’s Spectrum presentation of awards for services to NMO UK it will be extremely difficult, as everyone who has helped in any way, shape, or form deserves to be recognised by an award. Our hearts were touched by those families who lost loved ones to this terrible disease and yet, despite their personal grief, found the inner strength to arrange tributes and events in honour of their loved ones, to support our charity – and in doing so raise awareness of NMO through our JustGiving page and many other avenues.
Special appreciation must go to Kevin Beadell and his family. After the loss of his Father, Terry, in December 2013, Kevin, his family and team have done so much to further our cause, commencing with a four-day event including three 58-mile bike rides, a children’s fun mile, a half-marathon walk and a full marathon run. Kevin, his family and supporters, are planning still more events for the future including Sports Auctions, Race Nights, Charity Football Matches and Family Events.
THANK YOU SO, SO MUCH FROM EVERYONE WITHIN THE NMO COMMUNITY.
On 10th March 2015, Jennifer Susan Shipton passed away after suffering from NMO. As a community we send our condolences to her husband John and family, and wish to reassure them that their support for our charity’s aims and goals through Memory Giving will, in Jennifer’s honour, be put to the best possible use to beat this as-yet-incurable disease. Jen’s family are so determined that they will keep up the fight against NMO in her honour, and continue to this day to do everything within their power to raise both awareness and much-needed funds in our continuing fight. With that in mind we should like to extend our gratitude to her sister Sandy, husband Johnnie and Debbie her niece.
On 21st May 2015 Bill Irwin passed away after losing his 17-month battle with NMO. Bill continued to help NMO sufferers right up until the day he died, by providing regular blood samples to The Walton Centre, which were sent around the world for testing in the hope that eventually, through research, the cure would be found. His son Russell, whilst still mourning the loss of his Father honoured his memory by setting up, along with his family Greg and Carol, a JustGiving page. Our heartfelt sympathy and thanks go to Russell and his family for all their efforts and support.
Our first two events of 2015 got us off to a fantastic start. Two people very close to our hearts, with the help of family members, friends and supporters, overcame many of the difficulties associated with suffering from NMO, choosing different ways to set us on the road to where we are now.
John Loydon came out of enforced musical retirement to stage what we hope was the first of many Blues Nights to come at the Granby Arms, Uppermill, near Oldham. This would not have been possible without the tireless work and dedication of Gail McCallum, who is pictured below receiving, on John’s behalf, his Fundraiser of the Year Award 2015 at The National Conference and Patients Day, Aston Conference Centre, Birmingham.
Everything from start to finish was perfect. The evening was a tremendous success, and thanks are due to licensees Debee & Jamie Hardie, and all of the Granby staff on the night for all of their efforts, and for making everyone feel so welcome – which, without doubt, contributed to the success of the evening. Thanks are also due to John’s wife, Elaine, (who is also a Trustee of our Charity) for putting up with John in the build-up to the event. We should also like to thank John’s friends and musicians, Ged Turner, Paul ‘Bart’ Bartholomew, Phil Barratt, Steve Murgatroyd, and ‘roadie’ Jake Murgatroyd, along with guest trio ‘Rogue Gene’ – Paul Bartholomew, Geoff Sidebottom and Phil MacDonald.
Our next event, or should I say accomplishment, was nothing short of a triumph over adversity as Heidi Abrahams, who also suffers from NMO (pictured below receiving her Fundraiser award, with husband, Steve, at The Conference), took on the icy challenge of a speed luge. Totally committed, and determined that this debilitating disease would not get the better of her, she quite literally turned ‘disability’ into ‘THIS ABILITY’. As well as the rigours of her speed luge, there was a double celebration as she performed her first turns on ‘sit skis’, with support all of the way from her husband, Steve.
It has to be said that we should not, as a charity, have been able to reach the stage we are at today in our fight against NMO, without the sums that John and Heidi, and their supporters, raised through their splendid efforts.
Our next event, without doubt, introduced us to one of the hot favourites for 2016 Fundraiser of the Year: Mr John Kane. John, who went ‘above and beyond’ with a gruelling 8-hour Nuclear Oblivion Assault Course over 26 miles and 175 (British Army Standard) obstacles, did so because he was inspired by a truly inspirational young lady suffering from NMO: TiaGrace. John, you are also inspirational. For what you and your team went through to support NMO, we thank you from the bottom of our hearts. Grace also inspired our ‘Young Fundraiser of the Year’, Miss Lucy Chloe Moore, who took the message of NoMOre Suffering Alone into the classroom, also raising both awareness and donations through her JustGiving page.
Our next event was proof to anyone out there who has an idea for raising funds, that what starts as an acorn can indeed grow into a mighty oak, if you have the determination shown by a young lady, Annabelle Moult (who has been left paralysed from the waist down by NMO) and her husband Danny. Annabelle refuses to let NMO get the better of her, which was obvious at the event they organised on Saturday 29th August. With the support of many, many, people including local, national and international companies, the first event that will now become a permanent fixture on the NMO Spectrum UK calendar was born. In future this will be an annual event to be held at The Oxford Belfry, Thame, Oxfordshire, part of the Q Hotels Group, on the closest Saturday to Halloween, and henceforth will be known as The NMO SpectrumUK Masquerade Ball.
Annabelle’s event didn’t just raise a considerable amount of financial support it gave us the experience needed as a Charity and a Community Interest Company to stand us in good stead when arranging future events that will become red letter dates on the NMO calendar, including if all goes to plan, events in Liverpool, Lancashire, the West Midlands, and across the whole of the UK.
WE ARE HERE UNTIL WE BEAT NMO.
NMO SpectrumUK would firstly like to thank, for everything that went into what turned out to be a fantastic evening, Annabelle, Danny and their family and friends for their tireless dedication to our cause. Thanks are also due to Alexion Pharmaceuticals, A.J. Barker Building Services and Powernap Ltd for their sponsorship; Michael Godwin of MG Vending for sponsoring the entertainment provided by ‘Isabella’, our group for the evening (who were fantastic by the way); and MIQ Logistics who sponsored the main raffle prize of a £1000 holiday voucher. This was presented on the evening to the winners, Sam and Andy Woods. Finally, thanks go to everyone who supported by advertising in our first-ever official souvenir programme for the charity, and to all those who donated through Annabelle’s JustGiving page.
We held our first AGM as a Charity in conjunction with Annabelle’s event. In many ways the AGM was a bit of an eyeopener with regard not only to how far we had come, but even more importantly, to just how far we still have to go in establishing the correct criteria and codes of practice. It wasn’t what you would describe as a stormy affair but there was an element, mainly due to the commitment of all involved in our charity, of lambs becoming lions, which, obviously, we hope will continue for many years to come.
At the AGM, the trustees and appointed agents officially confirmed the appointment of Mr Robert Hunt as Press and Public Relations Officer for NMO SpectrumUK. Since Robert’s appointment he has left no stone unturned in enhancing the profile of NMO SpectrumUK, and for that I am sure the whole of the NMO Community is truly grateful. Robert initially trained as a journalist, working on newspapers in the Midlands. He then moved into public relations and marketing, working both ‘in house’ and on a consultancy basis for a number of organisations, including various parts of the NHS, over a period of more than 30 years. He also worked part-time as an adult education tutor for several years, teaching Spanish to beginners. Their second appointee, Gail McCallum, was as our Information Officer, to work alongside Robert and the Trustees to identify further opportunities to promote the Charity. Gail has a background in marketing and public relations in the Railway industry, and is a former Vice Chairman of the British Transport Pensioners’ Federation. She brings tremendously valuable skills and experience to her role within the NMO family. We are fortunate to have found Gail and Robert.
I hope, as we all do, that the efforts put into raising awareness and funds by every single person who has taken the time to come on board and join our family leaves you with a warm feeling. if so, then perhaps you could share that warmth with Angeline & James Mansfield who, in support of NMO SpectrumUK, braved the icy cold waters of the sea on Christmas Day in Porthcawl. Whilst most of us were tucked up nice and warm enjoying the festive season, Angeline and James were braving the icy waters in order to show to everyone that no matter the time, day or temperature, we need to keep taking the fight out there. If we believe as one, we can, and will, achieve our aim:
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