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.”