Author: TreatSMA
Spinraza will be offered in Italy to all with SMA
Yesterday the government in Rome decided that Spinraza will be offered in Italy to all those with spinal muscular atrophy.
Important update on branaplam development programme
Another exciting update: branaplam, an experimental molecule for SMA from Novartis, is finally moving ahead.
First open TreatSMA meeting
On Moday 18 September TreatSMA families held a meetup in order to get updates about treatments and discuss actions needed for fast and broad access to SMA therapy in the UK.
RG7916 moves to pivotal clinical trial in SMA types 2 and 3
Exciting developments! Roche’s new experimental drug for SMA is moving to late-phase clinical trial in SMA types 2 and 3.
Our SMA Story
Vinnie was born by C section on the 24/03/2015 and he was absolutely perfect in every way but I could never shake that feeling that he was too perfect. Always in the back of my head I had this horrible that something was terribly wrong. By the time he was 4 weeks old I was…
TreatSMA meeting 18 September!
Come and join our meetup on Monday 18 September to talk about access to SMA treatments and what we all need to do to receive it.
Day in the life of us
I’m Chloe and mum of three children. No, sorry: Careworker and Medication Administrator for my three children, or P.A. and Diary Coordinator of medical, school and social appointments, or Private Chef trained in diary-free catering and the production of meals to sustain blood sugar when required to help prevent blood sugar drops associated with metabolic…