AuthorTopic: Have YOU heard of SMA? ***please read***  (Read 503 times)

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henryandlesley

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Have YOU heard of SMA? ***please read***
« on: March 30, 2009, 19:02:32 »
No I don't mean the baby milk!

SMA stands for Spinal Muscular Atrophy, a condition many have never heard of. It is the biggest killer of under 2s and 1 in 40 of us are a carrier.


My wife's friends recently lost their baby girl to this terrible condition, and are now setting up a charity called ACTSMA - Ally Cadence Trust for Spinal Muscular Atrophy. This charity is to raise money to provide support and speacial equipment for families of those diagnosed with SMA, so that they can get the help they need, as soon as possible. Ally's family feel very strongly about the necessity for haste, since their beautiful daughter passed away only 12 days after her diagnosis, and they never did get the support and help they were promised.


You can read Ally's story here : www.allycadence.co.uk


The site for ACTSMA hasn't gone live as yet, they need to raise £5000 before they can get Registered Charity status, but there is a donations page on the site above.


Please take just a few minutes out of your day to read Ally's story and maybe give a little something. Even £1 - if enough people give that then they will soon reach their target.

You can learn more about SMA here - http://www.jtsma.org.uk/   This is also a charity to help families affected by SMA, as well as to fund research, however as I said above, they weren't able to help Ally's family in time, which is why they want to ACT by setting up ACTSMA.

Thanks for your time.

 






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