Author: Marni Smyth
UPDATE – Physical ability: What is important to you? Take part
We have received notification that the Physical ability: What is important to you? The study has reached its quota for non-ambulant participants. As well as this they have extended the age range to 2-60 years old. Therefore, please see updated invitation below: Are you interested in participating in two telephone/video interviews to discuss your experience…
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…
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…
Disability Expo to host webinar ‘Breaking Barriers: Disability, Sex & Relationships’
Disability Expo esteemed panel of experts are bringing a diverse perspective and shedding light on the challenges, triumphs, and unique experiences faced by individuals with disabilities in navigating their sexual and relational lives this Thursday 25th May at 1pm GMT. From exploring societal stigmas and misconceptions to addressing accessibility barriers and advocating for inclusive policies,…
Skiggle’s round-the-clock SOS emergency alert system
Skiggle offer support for disabled individuals, by funding and operating a unique round-the-clock SOS emergency alert service. This provides a place for people to turn to if they urgently need a piece of equipment, feed, or disability care product.
Trials for the new antisense oligonucleotide drug by Biogen.
Trials are taking place for the new antisense oligonucleotide drug by Biogen. Similar to Spinraza, but believed to have a better stability in the human body. This means larger dose can be administered through spinal tap at longer intervals compared to Spinraza. We believe they are aiming for every 180 days but yet to be…
UK SMA Patient Registry Update
We are delighted to announce changes in the UK SMA Patient Registry! These developments will see the collection of information from adults and parents of children and young people living with SMA about their experience of daily life, their activities and quality of life. Also known as patient-reported outcome measures or PROMs, this information will…