Thursday, July 04, 2013

BritMums Live, the Message and Screening

I minicard bombed Britmums 1 at BritMums Live -
yes, gallus annie, that I am!
Nearly 200 cards left on the tables,


nestled amongst the sweeties
in prime position
to catch attention,
to be picked up,
to be looked at.


The message
pure and simple: 
1 in 40 of us carries the SMA gene.
14 people at the BritMums Live 2013 will be carriers.

Do you know what SMA is?

If you do one thing today, please find out more about SMA or Spinal Muscular Atrophy.  Why?  Because the UK National Screening Committee are currently reviewing the policy on screening for SMA.  What does this mean?  On their website they state that:
"Screening is a process of identifying apparently healthy people who may be at increased risk of a disease or condition. They can then be offered information, further tests and appropriate treatment to reduce their risk and/or any complications arising from the disease or condition. It is important to ensure that the benefits and downsides of screening have been properly thought through. The UK National Screening Committee (UK NSC) is responsible for reviewing screening policies every 3 years and making recommendations to ministers in the 4 UK countries about whether to not a screening programme for a certain condition should be set up. "
The public -  you, me, those affected by SMA, those who are carriers (that's 1 in 40 of us, just in case you didn't already know), and those living "normal" lives - along with healthcare professionals and everyone else, have an opportunity to speak out, to tell their stories and have their viewpoint - positive or negative - heard.  This can be done through the Jennifer Trust by tomorrow or directly to the UK NSC before the 5th August.  Do you think that we should be screening for SMA?  Do you think that mothers-to-be have a right to know that they carry the gene responsible for SMA?  Do couples have the right to decide, fully aware and fully informed, whether they bring SMA and all it's complications - and utter joy too! - into their lives?  If you have an opinion, please let your voice be heard...



Midlife Singlemum said...

Genius! I'm so impressed with your ingenuity on this. I hope people followed it through and did some googling later. I'm sharing this post everywhere.

h0peful mummy said...

oh, thank you! quite a lot of the cards had gone when I looked later that day, but there haven't been many more hits on the blog... perhaps blogger did the work instead! thanks for helping spread the word xx

BavarianSojourn said...

A brilliant way to spread the word! So nice to meet you! :) x