Author: Andi Thornton
NICE refuses to recommend Spinraza to treat SMA
Shocking news. The National Institute of Health and Care Excellence officially recommends that nusinersen (Spinraza®) is NOT offered through the NHS to anyone with SMA.
Uruguay approves Spinraza
Uruguay approves Spinraza as a treatment for SMA
AveXis gene therapy trial in UK
In the next few weeks we are expecting the AveXis AVXS-101 trial to start enrolling. There will be two site centres here in the UK: Great Ormond Street Hospital for Children Contact : hinal.patel@ucl.ac.uk The John Walton Muscular Dystrophy Research Centre MRC Centre for Neuromuscular Diseases. Contact: Anna.peel1@newcastle.ac.uk There will be strict inclusion and exclusion criteria…
Adapted Trikes
Please note this is not an affiliated Theraplay post, this is a review compiled by an owner of an adapted trike who has no association to the company and the views are their own. Adapted trikes are a great way to add in cardiovascular / strengthening exercises to your child’s day. There are several places…
August is SMA Awareness Month
It’s August and its SMA Awareness Month. Please take time to view and share our video. Lets TreatSMA in all its forms, and lets get more treatments as soon as we can to help all.
A potential side effect added to Spinraza label
The European label of Spinraza will soon list a new potential side effect: hydrocephalus.
Innowalk – Parent Review
Please note this is not an official Innowalk post, this is a review compiled by an owner of an innowalk who has no affiliation to the company and the views are their own * As the website will state “The innowalk is a 3 in 1 device for sitting standing and moving. No independent ability…
Belgium and the Netherlands okay Spinraza treatment
Spinraza will be available in Belgium and the Netherlands starting 1 August 2018.