Spinraza on NHS for SMA

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Hi, My name is Shakil Malji and my wife and I have a five month old daughter named Maryam who has been diagnosed with Type 1 SMA (Spinal Muscular Atrophy) which causes progressive muscular weakness and loss of movement due to muscle wasting. More information can be found at https://www.nhs.uk/conditions/spinal-muscular-atrophy-sma/

Babies with this condition do not tend to live past 2 years of age unless treated with specific drugs. 

My son Abdullah who died at age 1 with the same disease was part of a trial by Biogen for a drug named Spinraza. This trial led to successful results and has been rolled to NHS Scotland but not to NHS England.

National Institute of Health & Care Excellence (NICE) have not approved the drug and are withholding significant treatment that could improve Maryam's quality of life.

This drug can help not just Maryam but many other children suffering from this rare disease in the UK.

We would appreciate if you could sign this petition to put pressure on those companies involved to get past any issues and provide this drug on the NHS and we appeal to Biogen and NICE in the name of Maryam and all the other innocent children that are suffering from this terrible disease to please come together to work for a solution to get this much needed drug on the NHS in England

 



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