04 February 2022 / Posted in: Information
National charity, Contact for Families with Disabled Children, have provided the following update which includes that practitioners should have started to invite for their vaccine the half a million high-risk children and children who are household contacts of immunosuppressed people of any age.
03 February 2022 / Posted in: Information
Open Inclusion are advertising an opportunity for disabled children aged 7 to 11 years, accompanied by a parent or guardian, to explore an AR (augmented reality) app at the National Gallery during half-term.
28 January 2022 / Posted in: Treatments & Research
We welcome the start of the roll-out of the risdiplam programme in England this week. To assist with understanding of what’s involved, NICE has published Q&As – this includes advice on when switching between risdiplam and nusinersen may be possible.
27 January 2022 / Posted in: Information, Support
Are you aged 13-18? Do you have a diagnosis of SMA? Jordanne has SMA Type 2 and is currently studying a master's degree in clinicial psychology. She's interested to hear more about how SMA affects the emotions and quality of life of people aged 13-18 years. Closing date: 1st March.
27 January 2022 / Posted in: Treatments & Research
Our thanks to the team for letting us know which new group of children they have invited Consultants from specialist neuromuscular Centres in England and Wales to refer to them for assessment for Zolgensma treatment at one of the four infusion centres, and what the process will be. Thanks also to them for their update on numbers treated to date.
20 January 2022 / Posted in: Help Us
Hazel is running the Great North Run this year in memory of Abigail.
18 January 2022 / Posted in: Information, Support
The Disabled Children’s Partnership’s #CountDisabledChildrenIn campaign calls on councillors in England to include disabled children in their plans. Councillors must invest in the social care services that disabled children and families have a right to in order to live a good quality of life, and right years of injustice. Join SMA UK and take action by emailing your local council.
18 January 2022 / Posted in: Treatments & Research
Results of an observational study of efficacy and safety data for Zolgensma in young under-studied patient populations, including children older than 24 months at treatment and those who have previously received nusinersen, were recently published in the October 2021 Lancet medical journal.
17 January 2022 / Posted in: Information, Treatments & Research, Support
The UK SMA NBS Alliance of patient organisations and the clinical and academic community is looking for a highly skilled Project Manager to support its core objective of driving progress towards the earliest possible introduction of NBS for SMA in the UK. Applications must be submitted by 30th January 2022.
05 January 2022 / Posted in: Treatments & Research
Biogen has announced that it has entered into an agreement with Ionis Pharmaceuticals to develop and commercialise a new antisense oligonucleotide, known as BIIB115, for SMA.