News and Events

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.

Huge Thanks To Tara Papworth Who Has Completed a 260km Wadi Rum Ultra Marathon

Tara Papworth is, without doubt, a star among stars. She finished the gruelling 260km Wadi Rum Ultra Marathon in the blistering heat of the Jordanian desert.

NMO Spectrum-UK extends the biggest ‘Thank you’ to Tara and her team for all of their efforts in support of our charity.  Tara, in her own words, would like to recognise those who assisted her in her tremendous efforts.

“Well, what an absolutely amazing week! It’s been an absolute blast and I’ve had SUCH a good time – totally hit my goal of “finishing in one piece having enjoyed it”.

Thanks so much to Jamie Sparks, Lee Fudge and their amazing team for their brilliant organisation and an incredible event in such a stunning and remote location. I actually very much enjoyed being a tiny speck in a massive desert.

Special thanks to ‘the man with the magic [yet painful] hands’ Kieran Lowe, who kept my calves from exploding each evening, although I’m not sure I have forgiven him for the toenail squishing incident yet.

Top, top, thanks to all the other runners for lots of laughs and for their support. I couldn’t have asked for a better bunch of people to do this alongside. I am in awe of each and every one of you. A dazzling display of human spirit, kindness, physical and mental strength and utter determination! So much good is being done through raising money and awareness for a variety of amazing causes.  Incredible job everyone!

Special thanks to Sean McGuigan for being a great tent-buddy and for taping me up most mornings. Thanks are also due to Charlotte Myant-Best for being a running-buddy with a plan on Day 4.

It was a wonderful occasion of sharing, especially food, funny/sick/weird stories and comparing manky feet/body parts. I love adventures where it’s normal to lose your toenails/skin (and show everyone), acceptable to poo outside (and talk about it), and have the highlight of your day being a mouthful of flat Sprite or Pepsi.

Thanks to everyone who has supported me over the last 5 months. This was not a solo effort by any means and I have appreciated every word of support, the training companionship, and the charity donations. I’ve had an absolute blast!

My fundraising page is open for a few more weeks, so if you’d like to donate you can do so at: www.justgiving.co.uk/tara-papworth

If you’d like to take part in the Wadi Rum Ultra 2018, you can find out more info and enter at: www.wadirumultra.com. I would 100% recommend it for an experience like no other!

And of course, finally, a shout out to the reason I chose NMO Research as my charity – the amazing Lily Hurford. Yes, I suffered for 5 days but that is only temporary. Lily has to face things I can’t even imagine on a daily basis. To me, she is the legend and hero.”

NMO Spectrum-UK Thanks Louise

Gareth Eggle – A Bridge Too Far

Go Gareth!  Bristol’s Half Marathon certainly wasn’t a bridge too far for NMO Spectrum-UK’s Fundraiser of the Year 2017, Gareth Eggle – our ‘good egg’.