Author: Andi Thornton
We are back!
Truthfully, we have been gone, despite being a little quiet, we continue to fight hard behind-the-scenes for formal approval next year for all of the available treatments.
Biogen on the NURTURE trial
Today Biogen provided us with an update on the NURTURE study which was published in Muscle & Nerve1.
Spinal Muscular Atrophy: A Comprehensive Guide
Spinal Muscular Atrophy (SMA) is a genetic condition that primarily impacts the motor neurons of the spinal cord. These neurons are vital for muscle activities such as crawling, walking, neck control, and even swallowing and breathing. SMA is characterized by a loss of motor neurons, which leads to muscle weakness and atrophy, or the wasting…
Scholar Rock Announce New 36-Month Apitegromab Extension Data
Scholar Rock have announced new 36-Month Apitegromab Extension Data which reinforces long-term substantial and sustained improvement of motor function in phase 2 Topaz trial patients with Nonambulatory SMA.
Join the NIHR online Q&A: severe neuromuscular diseases in children
On Wednesday 12th July 2023, 7pm to 8pm the National Institute for Health and Care Research, which supports delivery of research in the NHS, public health and social care and Muscular Dystrophy UK, the UK charity for individuals and families living with muscle-wasting conditions are hosting a webinar where you can ask leading experts about the…
Physical ability: What is important to you? Take part
Are you interested in participating in two telephone/video interviews to discuss your experience of Spinal Muscular Atrophy (SMA) and to help us understand what an important change in physical ability would be?
Physical ability: What is important to you? Take part
Are you interested in participating in two telephone/video interviews to discuss your experience of Spinal Muscular Atrophy (SMA) and to help us understand what an important change in physical ability would be?
Google Maps to show wheelchair access information for all
Google Maps is providing wheelchair accessibility information by default for over 40 million places worldwide, including on public transport, pubs and restaurants. The feature can help those with mobility needs to plan their trips by checking if the shop or landmark they’re visiting has step-free access. Since 2020, the ‘Accessible Places’ feature on Google Maps was an…