We met up with Richard Dawson and his wife Teri and Sarah Milner, at the Premier Inn for a coffee before we went to the event. We had walked the route earlier in the day to the BMA and it was only seven minutes by foot from the hotel. Immediately when we arrived we recognised faces. I saw Ian Pratt and his wife Catherine, Paula and Robert Maguire the couple who set up the Just Giving page and got the Ice Bucket Challenge rolling over here, Tony Bray, Sarah Lanni, Jennifer Malony, Greg Broadhurst, Suzanne Maguire and David Setters. We all greeted each other like we were a long lost family, all of us brought together under the worst of circumstances, but all the stronger for knowing each other.
The wonderful MNDA team introduced themselves too, there were far too many names for me to remember, but one was Andrew who sent us our invite and also Esther who helps with all the fundraising events. everyone was so lovely and kind. What a lovely bunch of people they are.
I was rather more embarrassed to realise that so many people read my blog. Of course I know people read it, I see the viewing numbers going up everyday, but when I actually meet someone in person who has read it, well I feel really exposed. It is wonderful to get such positive feedback though and I was very touched at all the kind words about it.
We were rather shocked when we were asked if we would do a short TV interview. They were doing a slot for each ITV regional news channel which will be aired across the country on Friday evening I believe. It is not something I relished at all and I am glad we didn't have too long to think about it. I didn't mind the radio interviews we have done in the past because no one can actually see us then. I am not sure I am going to actually be able to watch it, but hopefully it will do a little more to raise MND awareness and that is what is important.
While we were waiting to go into the main room, we were being offered canapés and wine. They kindly brought Christopher enough cream cheese sandwiches to feed four people! He did manage one I think and left the rest for others to share. We also saw Jon Lee from S Club 7 there. I believe he may have been there as a relative of someone who had MND, but I'm not entirely sure.
A lovely lady came and talked to us for quite a while, it wasn't until she left us that I realised she was Lucy Hawking, Stephen Hawking's daughter, we felt very honoured to have spoken to her.
We were then split into small groups to meet HRH The Princess Royal and each group was assigned someone from the MNDA. The singer Michael Ball was Master of Ceremonies. HRH The Princess Royal (Princess Anne), slowly made her way around the room talking to each group. Chris was determined to stand momentarily when she reached us. We had a lovely, brief chat with her and Chris even managed to get in some horsey talk. She was very nice and I think Chris now has a little crush on her. A photographer was taking photos of everyone and I believe we will get a link to view them soon. Meanwhile videos and photos of Ice Bucket Challenges were on a loop on big screens. We spotted our video and a photo of Karl being 'Iced' with our tractor loader bucket. We very chuffed to see ours included.
There was then a presentation to reveal what the amazing amount of money that was raised was going to be spent on and the affect that it has had on the MND community. A vast sum will be going into genetic research and stem cell research. One lady from the research team spoke to us earlier and we especially thanked her, as they are the people that truly give us hope. Funds will be invested in educating health care professionals too so that the needs for those with MND will be better understood. There will also be money invested in more campaigning in order to keep the funds rolling in. There was so much to take in, I have probably forgotten something, certainly many names for sure, but the money raised will certainly go a long way to make a difference, so don't let anyone tell you that the Ice Bucket Challenges were a waste of time.
HRH The Princess Royal then gave a speech and it was plain to see that she has been a supporter of the MNDA for a very long time and was very knowledgeable about MND. Michael Ball also spoke about how he became involved with the charity after doing the Ice Bucket Challenge himself last summer.
A very talented young opera singer then entertained us with a few beautiful songs.
The most amazing part of this evening though for me personally, was meeting our MND family. What a wonderful bunch of people brought together by the worst of circumstances. We would never have met any of them if MND hadn't entered our lives, but being able to talk, share experiences and more importantly getting advice from them, well that has been priceless and we can't thank them all enough.
The memories from last night will certainly stay with us for the rest of our lives. They will also be taking up a large part of our good memory bank. Chris was so much happier after the low mood he had been in yesterday because of his eating problems. In fact I do be believe he has a little crush on HRH now. He has always said he didn't have a bucket list, that he had done everything he had ever wanted to do, but meeting Princess Anne certainly made his day for sure.
The initial euphoria of last summer may have faded, but I believe we are all fired up again after this wonderful evening and knowing that something positive will come from it all.
So to everyone who took part in an Ice Bucket Challenge or made a donation, thank you from the bottom of our hearts. We may not be any nearer a cure at the moment, but you have given us hope in abundance and that is worth more to those of us affected by MND than you could ever imagine.
