Sunday, December 30, 2012


Stunning News - For the first time, EVER, SMA is going to be reviewed by the Govt with a view to pre-conception screening.

We have received a letter from Norman Lamb MP, who is the Minister of State for Care and Support at the Department of Health.

It is a lengthy letter, that is copied in to the Deputy Prime Minister  but here is a summary

Dear Tom and Maria

I wanted to write to congratulate you on the success of your evening reception on September 18 , and to commend your work to raise awareness of spinal muscular atrophy (SMA) through the SMASHSMA campaign. I know many MPs and supporters ( myself included ) were moved to hear the story of your daughter Estella. I was also impressed to read your blog setting out the successes of your campaign, and wish you every success in the future on campaigning on what is an important issue.

I am the Minister responsible for policy relating to long term conditions , and following your reception, I asked my officials to investigate the possibility of setting up a screening programme for those who might want to be tested for SMA

The letter then goes on to say that

  • The UK National Screening Committee ( UK NSC) are responsible for advising ministers on all aspects of screening policy
  • UK NSC will now review SMA screening programmes including pre-conception, antenatal and newborn screening for SMA.
  • This is the FIRST time the UK NSC have considered SMA for screening
  • The review will take the form of a PUBLIC CONSULTATION in the new year. More details of the consultation will come through next year. In the meantime any person or organisation wanting more details can look at
Once again congratulations on the success of your reception , and I wish you the very best in your future campaigning endeavours


I will be responding personally to Mr Lamb and Nick Clegg this week but what does this mean for SMA

1) There is now no need to get 100,000 sigs to bring SMA to the Government's attention. This has now been done.
2) For the first time ever, screening for SMA is being consulted on
3) When the consultation starts we will be calling upon SMASHSMA followers to be vocal about the need for screening and SMA research. We will be asking stakeholders to register for the consultation and to make their views known.
4) Above all it means that as 2012 ends we have achieved the first goal of the SMASHSMA campaign. We have brought SMA right to the front of government and medical screening attention. Through your efforts SMA has been raised from a disease that nobody had heard of to one that is now firmly on the government and DOH radar. By any stretch of the imagination that is a major achievement. Thankyou to every person who has followed the campaign this year. Well done - you wonderful people
5) Well done to Mr Lamb and Mr Clegg too for taking this matter seriously and for moving SMA up the political and research agenda.

So the year ends on a high as far as SMA and the possibility of screening is concerned.

What matters now is to make sure that the consultation is done correctly and that the spirit and the drive of this cause gets through - in the end this is all very, very simple. We are talking about a disease that is carried by 1 in 40 people. If those people are unlucky and have a baby born with SMA type 1 then there is no cure. That baby will die. It would be good if those 1 in 40 people knew who they were so they can take informed decisions and have choices.

What parent would disagree with that.

Estella's life was short and free from pain. That said we had to kiss her goodbye when she was only eight months old. If her legacy is that other parents don't have to go through that pain then I am sure she would be very happy. I have told you before , my little girl had wise eyes and an old soul in a little body that didn't work too well. She would very much like the idea of sparing sadness, she would very much like the idea of helping others.

Thankyou to everybody who has given so generously of their time.

Put your feet up for a couple of days. We#re going to need you again soon.

It's a new dawn , it's a new day - and we're feeling good.


  1. wonderful wonderful news for you!
    you have worked so tirelessly towards this - lets see what happens now