News and Events

Chugai’s NMO Meeting Statement

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

The NMO SPECTRUM-UK Summer Ball 2018

Hi everyone!

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.

Included:

  • 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 Papworth

 

 

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,

“YOU!”

 “THANK YOU, ONE AND ALL.”

NMO Wolf Run

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, info@nmouk.org.

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.

‘WELL DONE!’

Sumaira Foundation Annual NMO Awareness Gala

“Thank you to everyone who helped make our 3rd annual NMO Awareness Gala a tremendous success! Click the official video recap below + check out our momentous Bollywood evening.

From all of us here at TSF – we’re wishing you a Happy Earth Day 2018!”

Inspirational Saffie, one of NMO SPECTRUM-UK’s good eggs, hatches a plan to woo the Masons

Saffie

Saffie’s mum, Claire Eggle, works at Floweringi, a friend’s flower shop. As it is a young business, they were able to use the shop expansion and Christmas preview as a fundraiser and awareness campaign for the local community in Chard, Somerset. They held a raffle with prizes donated by local businesses. Saffie, Garth and Claire were on hand to tell many people all about NMO. Saffie and a friend raised a large amount by busking outside in the cold! The whole event was a great success, raising £375.20. More importantly, through the discussion about NMO, they have caused someone to question their MS diagnosis!

Saffie and her family with the Mason’s

Chard Masonic Lodge very kindly donated £250, and fund-matched another £250, a total of £500 donated to NMO SPECTRUM-UK, purely through a customer relationship at Floweringi – the flower shop that Saffie’s mum, Claire, works at. In gratitude to the 60+ members of Chard Masonic Lodge, Saffie painted lots of ‘thank you’, memory keepsake stones for the members to take home – and a large one for the Masonic Lodge. We thoroughly expanded our local NMO awareness thanks to this full article.

Saffie’s handmade thank you stones

I can’t help but be touched by the idea of the memory stones, as others must be. Saffie, like many young people affected by NMOSD, is without doubt an inspirational young lady, worthy of more than just our praise and admiration. Keep up the excellent work Saffie – without doubt a star of the present, and the future.

Anthony Hughes-McCann.
CEO, NMO Spectrum UK.

NMOSD Regional Patient Meeting on 26th January 2018

NMOSD Regional Patient Meeting on 26th January 2018 at Avonmouth House, London.

The Oxford NMOSD team invited people with NMOSD (and their guests) who live in the London area, to attend a patient meeting at Avonmouth House. There were 16 attendees, including 8 people with NMOSD, 6 guests (partner/family/friend), and four members of the Oxford NMOSD team: Dr Jackie Palace, Rosie Everett, Kay Day and Dr Silvia Messina.

We started with a questionnaire about medication and an overview of NMOSD and its treatment, followed by an exercise exploring the different medications NMOSD patients may be prescribed, and what they are prescribed for.

We then had a discussion about medications and the reasons why people may not take them, which stimulated lots of discussion. As staff we found this useful to help us understand the challenges of taking long-term medication, and from the feedback we received, found the session beneficial to all the participants.

We then had a delicious lunch and time to chat with each other. For some this was the first time they had met another person with NMOSD, despite their having had the condition for many years.

We should like to thank NMO Spectrum-UK, the UK’s leading charity and patient advocacy group in the fight against NMOSD, for funding the event and we look forward to the next patient meeting.

NMO Patient Meeting 2018

NMO Patient Meeting 2018

Please save the dates

 

13th April 2018
Possible workshops in the afternoon & evening informal meeting

14th April 2018 10.00-16.00
NMO Patient Day

Venue will be: Conference Aston, Aston University, Birmingham

If you are interested in attending please RSVP to nmo.advice@ouh.nhs.uk Or 01865231900 to receive further details.

All welcome, especially family and friends of someone diagnosed with NMO, even if the diagnosed person is not attending.

 

Please act fast as space is limited

NEWS FLASH!

After months of hard work, planning, designing and amending, the NMO Spectrum team is proud to announce the launch of its new website and social media experience.

Although the new site can still be accessed through our original address, we now have a new domain offering easier navigation to all who wish to access information about NMOSD (NeuroMyelitis Optica Spectrum Disorder). The new address is: www.nmouk.org

A great deal of effort and time has been put into the new site by our team, in conjunction with Stronghold Media our newly-appointed web designers and social media experts, who will also be assisting in a re-launch of our Twitter and social media accounts.

Our new site is an extremely important development in our efforts to raise both awareness and funds in the fight against NMOSD, so please visit the site and spread the word wherever possible as every click counts.

NMO Spectrum-UK and its Trustees would like to thank all those who have assisted in the development of our new site.

Now please have a look around. All input will be greatly, appreciated.