DCP Campaign - #CountDisabledChildrenIn
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.
Study Results Published: Zolgensma Can Benefit SMA Children Previously Treated With Nusinersen
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.
New Project Manager Role for UK SMA Newborn Screening Alliance
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.
Biogen Reveals Deal with Ionis for Development of New Drug for SMA
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.
SMA Europe Launches Survey: "Help Us Advocate For Our Common Needs"
05 January 2022 / Posted in: Information, Support
This pan-European survey aims to gain an in-depth understanding of the experiences people living with SMA have, with regards to nutrition, physiotherapy and treatment.
Free Mindful Mondays Group Course
05 January 2022 / Posted in: Information, Support
Starting on 10th Jan, this 12-week group course will be delivered by Josephine Dolan-Dufourd. Josephine is an OT based and registered in France with over 21 years experience, she specialises in mental wellbeing and mindfulness training forms the foundation for her work. This course is for anyone who has SMA, as well as family members, partners, carers and friends.
Updates on Covid Vaccinations for Children Aged 5 Years and Over
23 December 2021 / Posted in: Information, Support
The JCVI has recommended that children aged 5 to 11, who are in a clinical risk group or who are a household contact of someone (of any age) who is immunosuppressed, should be offered a primary course of Covid vaccination. Separately, in response to the Omicron variant, the JCVI has also advised that booster vaccinations should be offered to certain groups aged 12-17 years.
UN Resolution Announced to Increase Visibility for the 300 Million People Living with a Rare Disease
21 December 2021 / Posted in: Information, Support
The Resolution focuses on the importance of non-discrimination and advances key pillars of the UN Sustainable Development Goals (SDGs), including access to education and work, reducing poverty, tackling gender inequality, and supporting participation in society.
Our New Advocacy Lead - Say Hello to Portia!
17 December 2021 / Posted in: Information
We're delighted to let you know that Portia Thorman will be joining our team as Advocacy Lead from 4th January 2022. Find out more about her background and why she applied for the job.
Consultations, Campaigns, Surveys & Petitions
16 December 2021 / Posted in: Information, Support
There are a number of different ones on our website which you may wish to complete or get involved with. They cover a wide variety of topics, from research into transition to adult healthcare, to campaigning on the social care crisis.
