Author: TreatSMA
Helena’s story
After the smoothest pregnancy and delivery Helena was born. I felt so thankful for her safe arrival and that all appeared well. The first time I became concerned about Helena was about 6-8 weeks following birth, when unlike her big sister, she was still not taking any weight at all on her legs when held…
Letter to NHS England re. criteria for Expanded Access Programme
On 23 August 2017, TreatSMA along with SMA Trust, SMA Support UK and MD UK signed a letter addressed to the Head of Specialised Commissioning Team at NHS England. We urged a review of the published commissioning policy for inclusion of SMA 1 patients in the Expanded Access Programme of nusinersen.
Marilyn’s story
My name is Marilyn, I’m 61 years old and I have type 3 SMA. I sound like I’m introducing myself at a substance abuse meeting! Instead, it’s SMA that has abused my body for 61 years, and sadly, no amount of fighting it can defeat it. I was diagnosed at the age of 3 with…
Living with Chloe
I want to change my name to dad. Chloe shouts Mum prob every min: Mum move my legs, Mum pass me this, mum just do this, Mum I’m hungry, Mum I feel sick, Mum I’m tired, Mum Mum Mum! Not once Dad. Dad works I had to give up work as we have no childcare…
Morning in the life of an SMA type 2 family
Last night after finally finishing my sons physio, standing, stretches, chest physio, toileting putting his orthoctics on, a routine that can take up to two hours before bed I finally got to sit down. I than put the washing on, hung aload out, tided up from dinner, paid a bill online, opened up the mail…
Roche updates on RG7916 safety
Roche shared an update on the safety of RG7916.
NHS England publishes a commissioning policy on nusinersen EAP
NHS England has published an Interim Commissioning Policy on nusinersen EAP.