It's been a while.
There has been a lot going on. It started out that I did not want to write up details of the trip to London for the SMASHSMA reception with Nick Clegg as I wanted to be able to report on outcomes. I wanted to give time for things to settle to evaluate how succesful the event had been. For the background please see earlier posts.
So much has happened I hope you will forgive me just using bullet points
- The reception in London was a massive success. We had the Deputy Prime Minister, Nick Clegg, and the Health Minister, Norman Lamb, there as well as numerous MPs and other guests. At the time we were delighted with the session which went on for two hours. The Gillingwater SMA team from Edinburgh were on form revealing some groundbreaking SMA research that had been directly funded by your contributions. An amazing evening.
- Mr Clegg made a speech and instructed Norman Lamb to look into the possibility of testing for the gene that is carried by 1 in 40. He took our details and said that as he had just come into the post it would take 3 to 4 weeks to contact us to discuss in more detail how he could help. Mr Clegg had already asked for a consultation into SMA and we were awaiting contact on this.
- The London reception could not have happened without Andrew Roddison and Morrisons Facility Services who sponsored the reception and made sure that we had a wonderful memorable day in London. They have been great supporters and tremendous advocates for smashing SMA funding sponsorship at Rotherham United and paying for every penny at the reception.
- We had support from some of our most vocal tweeters and that was one of the main joys of the day - meeting some of you in the flesh. It was great to see people who had been so vocal on Twitter having their time in the sun too. Maria did point out that they were all female and all pretty but I put that down to sheer random luck :)
- Natalie Cassidy came down and was a great help on the day.She played the room and knew her stuff and gave a touch of celebrity and glamour to the event.The support of Natalie has been a cornerstone of the campaign. She is a true star.
- We were told by the Health Minister that he was very moved by our case and that he would be in touch in three or four weeks - that never happened. To be honest that has been the first major set back of our campaign. The Government showed interest on the evening but did not go through with their promise to stay in touch . Everyone tells me I was politically naive to trust them and I apologise to everybody who has followed our campaign for doing so.
- It has now been almost a year to the day that we first met with Nick Clegg. I was convinced on the night that our presentation had moved him and it would have been a perfect way for Mr Lamb to make a splash right at the start of his new position. My old Headmaster always said that people should be judged not by their words but by their actions and as nothing has happened we have almost given up hope of true political support. I MUST point out that this is not a political decision. It was never about parties - It was about our little girl Estella and we trusted Nick Clegg because he is a Husband and a Father. There are probably good reasons why we have not been contacted but it would have been nice to update us with progress.
- For clarity - the Gillingwater campaign needs £ 50,000 to keep going strong for 2 years. It is our belief that the breakthroughs they are having will make a MAJOR difference to the SMA experience for thousands of families. Tom Gillingwater forbids me from using the word cure ever - but he knows what I think :)
- We have continued to try and raise money for Tom Gillingwater - this will increase soon due to the kind donation of 1000 SMASHSMA bracelets and envellopes by twitter followers. We will be passing over the first £ 300 or so in January and there will be a monthly donation beyond that.
- We have moved house into an amazing place that has a lovely nursery for Cristina ( note new Spanish spelling )
- We have had Maria's parents over for a pre-Christmas Christmas. Great success and those of you who remember last Christmas will be pleased to see them looking so genuinly happy. They were our greatest rock during our short time with Estella and its now time for them to have the happy years they deserve.
- As I said there has been a lot going on and this is only a brief catch up. All goes well with Cristina - probably looking at mid February for her birth. Maria is doing an impression of the Goodyear Blimp and all tests are looking good.
- The Twitter account now has 41,500 followers and interest is as strong as ever. We are as grateful as ever for the support. We still get daily messages asking what SMA is - and that pleases me - my theory is that every person we tell can possibly become an advocate and there are some amazing people out there.