MCR/NW GROUP MEETING "EXCELLENT"

[mike scott]

Well guys and gals, the second Mcr group meeting in my opinion was excellent.
It was good to see that members who came and supported our first and launch meeting came back and continued to prove a real need for this group in Manchester, and it was good to see your friendly faces again and to also welcome new faces and friends.

The meeting was supported by Francisca Gracia Ruiz from UMIST University based in Manchester who has recently conducted a research programme into KC as part of her development . Unfortunateley she was unable to delve too deeply into her findings at this time , until her research has been validated but non the less she was amazing , answering and clarifying many points that were discussed generally throughout the evening. Francisca will shortly be joining the KC team at MREH to become a KC specialist and has promised that she would like to stay close to the group in future. This is greatly welcomed and i am sure will be beneficial to both the group in future and to Francisca.
On that note i wish her all the best in her future career endeavors on behalf of myself and the KC support Group as a whole.

Thanks for your support Francisca.

The role that i have agreed to take on of looking after the MCR Group i have to admit that i took on with some trepidation, the anxiety of wondering if anybody will turn up at all, followed by anxiety if so many people turn up that there wont be any where left to sit, then the anxiety of worrying if the content of the meeting is of the right balance and hoping that everyone is benefiting in some way or not all scares me to death. However following last nights meeting i really think that everyone is getting something from each others support and i feel confident that everyone enjoyed themselves.
I hope that you agree that the hard work being done for the MCR Group is proving beneficial.

Just prior to the meeting taking place i happened to bump into Mr Brahma who just happened to be passing at the time. Mr Brahma is the consultant surgeon at MREH and one of the leading corneal transplant surgeons in the country, giving many people the chance of a second chance with new and improved vision. Mr Brahma took the time last night to personally endorse his approval of the MCR KC group and wishes it ongoing success. He has also offered to give up some of his time to give us a presentation or two if we would like, and has also offered to find us a larger room within the hospital should our numbers require it. For the next meeting he has offered to give us a presentation on the groundbreaking management systems of C3R crosslinking and the use of intacs as options. so i have every intention of taking him up on his very generous offer.
I am hoping the next meeting will be held around March 2008 give or take depending on Mr Brahma's availibility.
I hope this meeting will be widely supported and well attended by all MCR/NW members. Please give me some feedback on this everyone with your interest in this presentation and if you would be likely to come along, this would give us an idea of booking one of the conference rooms or not.

well enough said for now or you'll all get bored reading so much , but once again for everyones support and remember the group belongs to all of us, and it is for all of us to look after and appreciate.
remember we will only get out of life what we are prepared to put in so lets all continue to support each other and the group for ourselves and future KC'ers

I welcome everyones comments and feedback as it all goes to make the group successful, entertaining and informative for all.

Very best wishes to you all

Mike Scott MCR KC Group

[Steven Williams]

Firstly Mike well done and thanx for making the second Manchester KC meeting possible and for your report.

From my POV:-

The total attendance of approximately 15, was down on the first meeting. Pity that Tommy Dean was unable to make the meeting as imo he has alot to offer. Of the 15 in the room 5 did not have KC. You advsied me that there are approximately 1,000 registered KC patients at MREH so the key question is why only a 1% turnout? Once this issue is addressed I think that the group will grow and become a great success for as you say the success of the group is based on its KC members and their quality and quantity input.

I did not find the input from Francisca Gracia Ruiz very informative and her KC knowledge seemed to be very limited. However as she is a Spanish student at Manchester UMIST conducting a research program into KC I did not expect much. I found it difficult to understand what she said at times. She was a lovely person and I wish her well in her chosen career.

From the two meetings so far I have got the most from the meetings through the interaction wth fellow KCers however the boardroom meeting room with the seating around the perimeter makes it difficult to interact.

The consultant surgeon at MREH Mr Brahma's offer to give us a presentation at a future meeting on the groundbreaking management systems of C3R crosslinking and the use of intacs as options promises much and I look forward to that. Your reference though to him not being bullied at the meeting caused me concern. I hope that KCers who are prepared to ask the tough and relevant questions are not being classified as bullies by high command.

It would be interesting to read comments/reports from others who also attended Thursday nights meeting.

As this was the last 2007 Manchester KC meeting best wishes for Xmas and the new year and I look forward to meeting fellow Manchester KCers in March in the new year.

VBW

[mike scott]

Hi Steve

Thank you for your comments.

Yes the attendance was down slightly from the last meeting, and there were 18 people this time.
very kindly more than several members had phoned me in the few days prior to and on the day that as much as they would have liked to attend, that unfortunateley work commitments etc prevented them this time, but non the less would i keep them informed of all delevopments via the other means that i have contact with them beyond the meeting forum.

With reference to Mr Brahma and any other professional guests that are willing to support the group, i am absoluteley certain that they are more than open to answering tough, but relevant questions, what i am saying is though that i am just as certain that they shouldnt be open to or subjected to having their expert status contradicted or criticised for the sake of contradicting or criticising and i say that on the basis of a potentially serious matter that occurred behind the scenes earlier this year that could have had serious knockon effects for the group at large. So all i am saying is that the proffessionals that are expertly charged with the care of many peoples lives , daily , should be afforded the respect that they have earned. General questions and answers can be discussed in an open environment. Questions relating specifically to any 1 individuals specific case should be discussed privately with the relevant people only.

I feel that Francisca as i reported, supported the meeting by being able to confirm or clarify points raised by members when it was necessary and for the rest of the time she was listening intently to the groups discussions with interest and a greater appreciation at the end of the meeting of how important it was to have the group. This was certainly the discussion i had with Francisca at the end of the meeting, so once again thank you Francisca for your support and long may your support continue.

Thank you also to those people who have emailed me directly to say that they found the meeting enjoyable and informative.

VBW

Mike Scott

MCR KC Group Moderator

[Steven Williams]

Hiya Mike,

Not seen any messages from you on here although I've been absent for a while. Hope that you are well.

Tried to post a new topic in this section headed "Scheduled 2008 Manchester KC meetings" but dont have the necessary permissions to do so.

Are there any future Manchester meetings planned? You mentioned a March meeting with Mr Brahma at the last Manchester meeting.

VBW