Friday, August 24, 2012


September 18th will be an important date in the fight against Spinal Muscular Atrophy.

We have a confirmed House of Commons reception with Nick Clegg, the Deputy Prime Minister from 6 pm - 8 pm that evening. This follows a constructive meeting we had with the Deputy PM earlier this year.

This is an opportunity to

  • Explain what SMA is
  • Explain that 1 in 40 of people carry the disease
  • Highlight the support and research that surrounds SMA in the UK
  • Stress the need for awareness and how screening could improve the options available to parents
Morrison Facilities Services have been tremendous friends to the SMASH SMA cause and they will be sponsoring the reception. Natalie Cassidy will attend to add celebrity weight to the message.

The most important thing now is to ensure that as many MPs as possible attend the reception and that is where you come in. 

It would be terrific if you would email the Member for your area to ask if they would attend the reception. I have put the suggested wording below.

Dear .............

Spinal Muscular Atrophy Awareness Reception

I am writing to inform you that a reception is being held in the Macmillan Room of Portcullis House on Tuesday 18th September from 6 pm - 8 pm. The reception is being hosted by the Deputy Prime Minister, Nick Clegg.. The reception is to raise awareness of Spinal Muscular Atrophy (SMA). 

  • SMA is the number one genetic killer of babies in the UK
  • 1 in 40 adults are SMA carriers
  • If both parents are SMA carriers then their baby stands a 1 in 4 chance of having SMA
  • A simple genetic test would alert parents if they were carriers

The evening has been organised by Nick Clegg following a meeting with two parents who approached him following the death fo their daughter in November 2011. Estella Sweetman-Lopez was 8 months old when she died from SMA

Estella's parents have worked tirelessly to raise awareness of this disease. They have 

  • 35,000 followers on Twitter and Facebook
  • Raised over £ 40,000 towards SMA research
  • Had national newspaper coverage for their SMASH SMA campaign
I have followed and supported their campaign closely and would be very grateful if you would attend this reception on behalf of myself and the parents who have been affected by this disease from within your constituency. Research suggests that the cure for SMA may be very close - and it is the UK that stands a very good chance of unlocking the genetic solution. How wonderful if this campaign resulted in a cure being found for the number one genetic killer of babies.

For more details of the background to Estella please look at these two links. The first one is a moving video that has been seen by over 50,000 people. The second gives details of Estella's life. . 

I know that if you look at the information you will understand the importance of supporting this tremendous cause. May I thank you in anticipation for your support in raising awareness of a disease that could affect any one of your constituents


Please take a moment to send that to your MP

 You can find their details here

Last thing for this blog.

I mentioned Morrison and their support of the SMASH SMA campaign. Just look at this tremendous sign that they have put in at Rotherham United's new stadium for the forthcoming season. They have been tremendous supporters and could not have been kinder.

1 comment:

  1. Great idea, I have emailed my MP today