Monday 29 November 2010
MND research update
I wanted to let everyone know that last week we had news that a trust fund that provides donations to charitable causes have agreed to provide the full £100k for this research. We are hoping that following the completion of skin biopsies the research can start in the new year. Thanks to everyone for taking an interest in this, for those of you who wanted to make contributions, I will keep you up to date in case further funding is needed to which these donations can applied.
Sunday 28 November 2010
Friday 26 November 2010
Birthday Break
I mentioned in the last post that Tracy arranged a night away at Limewood at Lyndhurst in the New Forest. Well that is where I am while writing this. It is probably the best hotel we have ever stayed in. Jamie Cullum got married here apparently and the car park had predominantly Aston Martins, Porsches and Range Rovers in. My Mercedes SLK AMG 55
would have been right at home. Unfortunately the VW Caravelle van I traded it in for,
looked rather more conspicuous. I am surprised that the doorman who offered to park it didn't stick it in the staff car park.
The hotel is stunning. An old manor house set in the moorlands of the New Forest in Lyndhurst. The first hotel I have been to where the rooms look like the brochure photos. There are numerous cosy lounges and a central indoor terrace. There is also a spa within the grounds. We have had a relaxed afternoon. We managed a walk around the grounds and out on to heathlands. We didn't get very far before the combination of rough ground and an icy arctic breeze persuaded us to return. We had thought earlier about visiting the nearby beaulieu motor museum but it was getting a bit late and having paid to be in a swanky hotel we thought we should get our money's worth.
So we spent the rest of the afternoon doing very little helped by the free wireless internet access!
I can't pretend it isn't incredibly frustrating having to be fed through a tube when there is such fantastic food available. Tracy was happy to keep eating fairly low key in one of the lounges which helped and I managed a few mouthfuls of risotto.
If you are looking for somewhere a bit special, Limewood is worth a look.
would have been right at home. Unfortunately the VW Caravelle van I traded it in for,
looked rather more conspicuous. I am surprised that the doorman who offered to park it didn't stick it in the staff car park.
The hotel is stunning. An old manor house set in the moorlands of the New Forest in Lyndhurst. The first hotel I have been to where the rooms look like the brochure photos. There are numerous cosy lounges and a central indoor terrace. There is also a spa within the grounds. We have had a relaxed afternoon. We managed a walk around the grounds and out on to heathlands. We didn't get very far before the combination of rough ground and an icy arctic breeze persuaded us to return. We had thought earlier about visiting the nearby beaulieu motor museum but it was getting a bit late and having paid to be in a swanky hotel we thought we should get our money's worth.
So we spent the rest of the afternoon doing very little helped by the free wireless internet access!
I can't pretend it isn't incredibly frustrating having to be fed through a tube when there is such fantastic food available. Tracy was happy to keep eating fairly low key in one of the lounges which helped and I managed a few mouthfuls of risotto.
If you are looking for somewhere a bit special, Limewood is worth a look.
Monday 22 November 2010
This never fails to make me smile
This is a better version of the previous video, look at Luke's expressions!
November in a Nutshell
Tracy has just told me that instead of doing the usual Round Robin inside the Christmas cards this year, she would simply include a link to my blog, so I thought that I better update it pronto. So for those of you good people who keep up to date with it, your work is done! For the rest of you, get reading.
I am still here. Lack of entries down to several factors, not least the 'homework' syndrome; if you put off doing it, the volume increases at an inversely proportionate rate to your enthusiasm level to complete it. My latter exam results at school illustrate that I am no stranger to the problem.
The other phenomenon which I am experiencing is the less I do the less I fit into the day. To explain further, it can be 4pm and I still haven't done something fairly simple planned for that day (more often than not it includes updating the blog). When I was working I could have seen 3 prospective clients in Central London, Surrey and Hampshire, spoken to 20 other companies on the phone and resolved a handful of crises in the same time frame. If I spoke to my mum in the evening it would sound like her day had been equally busy despite it comprising of a trip to the local Budgens and a high pressure meeting about the weather with Joyce down the road, over coffee!
And now it all makes sense. (mum if you are reading this, sorry)
So, instead of trying to catch up with the blog backlog by writing ten full length entries, you will have to make do with this compressed summary and hope you aren't as unimpressed as Mr Perry, my English teacher was in 1983!
At the beginning of November I took the boys to The Top Gear Live show at Earls Court. I remember writing last year that I was going to go to this year even if I had to take breathing apparatus along. Fortunately this wasn't required but I will make the same promise for next year. My mate Stuart bravely agreed to accompany us and despite suffering a nasty gash to his head en route, the result of an argument with some shelving in a petrol station shop, he did a sterling job of keeping control of the boys. The show was the usual mix of stunt driving and immature antics that you would expect from messers Clarkson, Hammond and May but you can't fail to entertain 9 year old boys by driving a car at high speed around a small arena, especially when the car is engulfed in flames.
The following week we took the boys to see The Railway Children production at Waterloo. They are using the old Eurostar terminal, with the audience sat on opposite platforms overlooking a sliding stage on the track. We had hoped that the boys would enjoy it, especially as a real steam train is used, but it simply couldn't compete with the possibility of seeing Stig get cremated!
Jumping forward to this weekend, we took the boys to Wimbledon theatre to see Cirque de Glace. Billed as a Cirque de Soleil on ice, we were all a bit disappointed. The ice skating was impressive, considering the size of the stage but it all got rather repetative and the production's premise - the history of the earth, was rather pompous. Mercifully it was an abridged history, particularly between the end of the first act which depicted the iron age and the start of the second act which dealt with the moon landing. But we didn't complain; if they had covered the first 3,999,999,960 years in 60 minutes, they were hopefully going to knock out the remaining 40 in a few seconds! They managed to stretch it out to 30 minutes, during which we had also got a better view, courtesy of the 20 people in the next 2 rows who decided at the break that Wimbledon must have something better to offer. The boys would have joined them given the choice.
Other events during November included my birthday. Quite frankly I would have let it pass ignored, but I know others including the boys like doing something, so we did. We had some friends over on Saturday and Tracy has booked a night away in a New Forest hotel this Thursday which will be nice although I am sure we both have worries on the logistics of it. I also received a beautiful drawing by Tracy of the boys and me.
I had a nice day on Friday with Adam at Duxford Air Museum near Cambridge. Bit of a treck, particularly on the way back through Friday evening traffic. The sat nav decided it knew a better route than the A1M and M25 so if you live anywhere within the M25 we probably drove past your house... Possibly twice. The museum is great (assuming that you like aeroplanes) and there are some brilliant exhibits including Blackbird, B52, Vulcan (I can almost see your eyes glazing over so I will move on ). Adam will never forgive me if I fail to mention that the 'impressive' growth under his nose is purely for charity and will be gone first thing on December 1st. I know he is very self conscious about it so as we wandered around the US Airforce hangar, I told him he needn't worry as everyone would just assume that he was American.... A gay American obviously!
.
.
I am still here. Lack of entries down to several factors, not least the 'homework' syndrome; if you put off doing it, the volume increases at an inversely proportionate rate to your enthusiasm level to complete it. My latter exam results at school illustrate that I am no stranger to the problem.
The other phenomenon which I am experiencing is the less I do the less I fit into the day. To explain further, it can be 4pm and I still haven't done something fairly simple planned for that day (more often than not it includes updating the blog). When I was working I could have seen 3 prospective clients in Central London, Surrey and Hampshire, spoken to 20 other companies on the phone and resolved a handful of crises in the same time frame. If I spoke to my mum in the evening it would sound like her day had been equally busy despite it comprising of a trip to the local Budgens and a high pressure meeting about the weather with Joyce down the road, over coffee!
And now it all makes sense. (mum if you are reading this, sorry)
So, instead of trying to catch up with the blog backlog by writing ten full length entries, you will have to make do with this compressed summary and hope you aren't as unimpressed as Mr Perry, my English teacher was in 1983!
At the beginning of November I took the boys to The Top Gear Live show at Earls Court. I remember writing last year that I was going to go to this year even if I had to take breathing apparatus along. Fortunately this wasn't required but I will make the same promise for next year. My mate Stuart bravely agreed to accompany us and despite suffering a nasty gash to his head en route, the result of an argument with some shelving in a petrol station shop, he did a sterling job of keeping control of the boys. The show was the usual mix of stunt driving and immature antics that you would expect from messers Clarkson, Hammond and May but you can't fail to entertain 9 year old boys by driving a car at high speed around a small arena, especially when the car is engulfed in flames.
The following week we took the boys to see The Railway Children production at Waterloo. They are using the old Eurostar terminal, with the audience sat on opposite platforms overlooking a sliding stage on the track. We had hoped that the boys would enjoy it, especially as a real steam train is used, but it simply couldn't compete with the possibility of seeing Stig get cremated!
Jumping forward to this weekend, we took the boys to Wimbledon theatre to see Cirque de Glace. Billed as a Cirque de Soleil on ice, we were all a bit disappointed. The ice skating was impressive, considering the size of the stage but it all got rather repetative and the production's premise - the history of the earth, was rather pompous. Mercifully it was an abridged history, particularly between the end of the first act which depicted the iron age and the start of the second act which dealt with the moon landing. But we didn't complain; if they had covered the first 3,999,999,960 years in 60 minutes, they were hopefully going to knock out the remaining 40 in a few seconds! They managed to stretch it out to 30 minutes, during which we had also got a better view, courtesy of the 20 people in the next 2 rows who decided at the break that Wimbledon must have something better to offer. The boys would have joined them given the choice.
Other events during November included my birthday. Quite frankly I would have let it pass ignored, but I know others including the boys like doing something, so we did. We had some friends over on Saturday and Tracy has booked a night away in a New Forest hotel this Thursday which will be nice although I am sure we both have worries on the logistics of it. I also received a beautiful drawing by Tracy of the boys and me.
I had a nice day on Friday with Adam at Duxford Air Museum near Cambridge. Bit of a treck, particularly on the way back through Friday evening traffic. The sat nav decided it knew a better route than the A1M and M25 so if you live anywhere within the M25 we probably drove past your house... Possibly twice. The museum is great (assuming that you like aeroplanes) and there are some brilliant exhibits including Blackbird, B52, Vulcan (I can almost see your eyes glazing over so I will move on ). Adam will never forgive me if I fail to mention that the 'impressive' growth under his nose is purely for charity and will be gone first thing on December 1st. I know he is very self conscious about it so as we wandered around the US Airforce hangar, I told him he needn't worry as everyone would just assume that he was American.... A gay American obviously!
.
Monday 8 November 2010
Help fund exciting MND research
Another MND sufferer and myself have been discussing an exciting research opportunity with a leading MND specialist at Kings College Hospital. It is based on a 3 year study to try and discover a drug which can remove a protein which is believed to be the cause of motor neurone damage in 90 percent of MND cases. The research will use stem cell techniques to develop motor neurone cells from skin cells of 5 MND sufferers, including me and develop a drug which can successfully remove the protein. It is widely believed that the nature of motor neurones and the a prevailing toxic environment means that stem cell implanting is not an effective procedure, but using stem cells in the manner proposed could dramatically accelerate the discovery of an effective treatment.
However, this research needs up front funding for the 3 year period totalling £100,000. The other MND sufferer has already agreed to put £20,000 of personal funds in and I am prepared to contribute between £5000 and £10,000. So we need to raise at least £75k,. We have approached the MNDA and whilst they would in principle be prepared to contribute, they would not do so until the end of 2011. We all know that medical research is a slow process and we know that any success may not be soon enough for us, but the sooner we start the better and Kings could start as soon as 12 weeks after securing funding.
So to get to the point, we need funding. I am not looking for anyone to contribute personally because you have already generously donated on at least one occasion. What I would like you do is forward this email to any organisation who you think could make a contribution to the charity trust which will fund the research.
I appreciate that in the current climate, funds are tight and some of you with your own businesses know that any expenditure has to be carefully considered, but I hope that the possibility of being directly involved in curing this horrific disease will help organisations decide to contribute whatever they can.
For anyone who would like to have more details of the research before committing to making a donation, I am happy to provide documents from Professor Chris Shaw.
If you can help please email me on this address steveevans@embergardens.co.uk
.
.
However, this research needs up front funding for the 3 year period totalling £100,000. The other MND sufferer has already agreed to put £20,000 of personal funds in and I am prepared to contribute between £5000 and £10,000. So we need to raise at least £75k,. We have approached the MNDA and whilst they would in principle be prepared to contribute, they would not do so until the end of 2011. We all know that medical research is a slow process and we know that any success may not be soon enough for us, but the sooner we start the better and Kings could start as soon as 12 weeks after securing funding.
So to get to the point, we need funding. I am not looking for anyone to contribute personally because you have already generously donated on at least one occasion. What I would like you do is forward this email to any organisation who you think could make a contribution to the charity trust which will fund the research.
I appreciate that in the current climate, funds are tight and some of you with your own businesses know that any expenditure has to be carefully considered, but I hope that the possibility of being directly involved in curing this horrific disease will help organisations decide to contribute whatever they can.
For anyone who would like to have more details of the research before committing to making a donation, I am happy to provide documents from Professor Chris Shaw.
If you can help please email me on this address steveevans@embergardens.co.uk
.
.
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