May’s Guest Blog – Val Wilson (Secretary of North West Lupus Group)

[Paul_Howard]

This month’s guest article has been written by Val Wilson. Val Wilson is the secretary for the North West Lupus Group who hosted the LUPUS UK National Conference earlier this month. She’s written about the preparation she and the group put in;

"As the 2013 National Conference was planned to take part in Chester, it fell upon the North West Lupus Group to host the event this year. A team of four people from the committee comprising Elaine Holland – Chair (top left), Val Wilson – Secretary (top right), Janice McCann - Awareness Officer (bottom left) and David Price - retired Chair (bottom right) agreed to work together on the planning.

In September we met up with Chris Maker, Director and Geraldine Leonard, Office Manager of LUPUS UK, at the Crowne Plaza Hotel in Chester. Geraldine steered us through the programme which she has arranged for many years. We each identified our area of responsibility and after a hearty lunch, returned to home ground to work out a plan.

No sooner said than done, Val got a boiling of Blackpool rock on the go - the folk at the rock factory wanted to know about lupus, and, most importantly, how to spell it! The previous week they had made a spelling mistake in a whole batch of rock! Meanwhile David got busy in his workshop creating butterfly brooches.

Janice and the Chester Coffee and Chat Group volunteered to collect quality prizes for the big day and did a splendid job.

In March we met at the hotel again to report on the preparations so far. A group of people were to be busy in the wings - six agencies for lupus related conditions were going to attend with advice for the delegates. Chetham’s School at Manchester couldn't provide a group of musicians to entertain us because of exams but we had a secret weapon ! Alexandra, a Chetham’s student, is also the daughter of Sally, a committee member. She brought some revision along with her, but probably didn't do much, and later treated us to some tricky finger work on her guitar, followed by Sarah, a harpist who had trained at the Royal Northern School of Music. Her beautiful pieces soothed us at the end of a long day.

All was in place, and we were ready for the Meet and Greet. I suspect some people were looking forward to catching the Cup Final, too. The result was certainly a popular topic of conversation the next day! People were also chatting about Hugh Lupus who was the second Earl of Chester and spent much of his time fighting the Welsh, hence his wolverine nickname! Elaine quickly wove him into her Welcome Talk which was a whistle stop tour of the North West. The only thing that was missing on Sunday morning was a man-sized wolf who would have come along but Chester F.C. had a greater need. Out of our control was a Marathon event creating havoc with arrival times. But we “kept calm and carried on”.

Hosting the actual event was tiring but rewarding. From welcoming delegates at the

Meet and Greet on Saturday afternoon to the closing of the Conference on Sunday afternoon we were mentally and physically immersed in our responsibilities but were rewarded by kind appreciation afterwards."

Everybody at National Office wants to say a big Thank You to Val and the North West Group for all the hard work they put in to make the conference a success. If you weren't able to attend the conference you should be able to read about it a future News & Views magazine. Videos of the presentations made by the guest speakers will also be uploaded to the LUPUS UK YouTube channel in the coming weeks.

If you’d like to learn more about the North West Lupus Group and get involved, you can take a look at their website here - northwestlupus.org.uk/

[Sue47]

I would just like to say on behalf of the Chester Group, that I am extremely saddened and offended by Val's comments and believe there has been some misunderstanding. We as a group were asked about fundraising ideas to raise money towards the Chester Conference and raising awareness. We at no point 'snaffled' any prizes intended for the conference!!!!. We as a group worked tirelessly for donations and raffle prizes for the fundraiser in order to raise funds for the Conference. One of the prizes we had donated was organised by my son through Sony, and we were asked if we would be prepared to do a swap as one of the prizes Janice had had donated wasn't appropriate for the conference. All of the other prizes were donated for the fundraiser and until today we were very proud of our efforts in raising £1577.07, towards the event.

[Nikinoo77 in reply to Sue47]

I too like Sue are deeply saddened by this blog as I feel the comments are misrepresentation of the actual situation, and that the composer of the blog should corrected this as nothing was "snaffled" !!!!

[margareth8537]

Not having been able to attend the day I found the blog interesting and entertaining. The bit about "snaffled" certainly did not come across as anything but the kind of thing that happens when any event is organised, and I am sure would not be taken unkindly by others.

Please don't let it spoil your feelings of a worthwhile job done

Margaret

[charm81]

Thought the lupus rock was a great idea. Went down a treat in our house.

Thanks Val xxx

[pattismith]

Organising any event is hard work for everybody and considering it's all done voluntarily the people working so hard should be praised. I attended, it was my first ever Lupus event and l was more than impressed with the commitment, care and consideration put into the whole event. Saddened that part has been misinterpreted and hope it hasn't caused offence as this is the last thing Val would have intended. I didn't get the chance to speak to Val, but she has communicated with me via email and made me feel very welcome.Sometimes it's hard to please ALL the people All the time ! Keep up with the hard work Lupus UK, we are all in this together remember