Author: Andi Thornton
Our condition costs millions, our lives are priceless. Treat SMA!
Today is SMA Awareness Day.
An SMA gene therapy trial starting in London
The first European trial of AVXS-101, an experimental genetic therapy for spinal muscular atrophy, has opened in London.
Registration open for next NICE Committee meeting on Spinraza
Registration is now open for the NICE meeting on Spinraza which will be held at NICE Manchester office on Tuesday 23 October 2018.
At a Spinraza meeting at NICE today
Today we kept pushing for wide access to treatment at a closed-door meeting at NICE.
Powerchair choices – our experiences with the Tiny Trax
Deciding on which powerchair to get for your child, especially their first real one, can feel like a daunting task. A lot of SMA children who have the ability to control a powerchair from a young age start off with a Whizzybug which is a small motorised powerchair suitable for ages 2-5 (approximately), it gives…
Powerchair choices – our experiences with the Tiny Trax
Deciding on which powerchair to get for your child, especially their first real one, can feel like a daunting task. A lot of SMA children who have the ability to control a powerchair from a young age start off with a Whizzybug which is a small motorised powerchair suitable for ages 2-5 (approximately), it gives…
Prime Minister asked about Spinraza
Mary Glindon MP asked the Prime Minister about problems with access to Spinraza.
TreatSMA advocates for universal newborn screening for SMA
TreatSMA submits an opinion on universal newborn screening for SMA.