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.
EVENTS AND FUNCTIONS 2015
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.
YOU ARE ALL STARS. THANK YOU SO, SO MUCH!
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: