Submitted on Friday 17th February 2017
Published on Friday 24th February 2017
Current status: Closed
Closed: Tuesday 2nd May 2017
Signatures: 485
Grant children immediate access to life saving drug.
NHS England have today announced that all early access programmes regarding Nusinersen will be put on hold. They want to open just 5 centres accross the country, this takes time. Time is something many SMA children don't have.
Please join me in asking NHS England to reverse this decision.
Nusinersen is the only known treatment of SMA, it is not a miracle cure, however it gives children time and a better quality of life.
Spinal Muscular Atrophy, what's that you might ask. A month ago I wouldn't have known my self.
It's an evil disease that effectively makes your child waste away. Their muscles waste until eventually they suffer respiratory failure, the whole time their brain unaffected.
You can't sign this petition because it is now closed. But you can still comment on it here at Repetition.me!
13.59.236.219 Fri, 19 Apr 2024 19:57:54 +0100
