National programme for carrier or newborn screening for SMA not recommended by UK National Screening Committee (NSC)
18 February 2019 / Posted in: Treatments & Research
This was their conclusion following their consultation and evidence review. We will continue to work with other groups to push for both a review of the evidence criteria and a further urgent review of a newborn screening programme for 5q SMA. You can read our submission to the consultation and more about NSC's recommendation here.
Please invite your MP to the 25th February Parliamentary ‘drop in’ about access to nusinersen (Spinraza) for England, Wales and Northern Ireland
14 February 2019 / Posted in: Treatments & Research
MDUK and SMA UK have jointly arranged this event. Parents and adults representing the SMA Community will be telling MPs about their experiences of living with SMA, and will be joined by clinicians to talk about the importance of access to nusinersen. They will be outlining the actions MPs can take to show their support and raise the matter further.
Subject to successful sign off, nusinersen is expected to be routinely available in Scotland for those with SMA Types 1, 2 and 3 from April 2019
12 February 2019 / Posted in: Treatments & Research
Nusinersen has been routinely available to children with SMA Type 1 in Scotland since May 2018. This will continue. The SMC has now granted nusinersen ultra-orphan designation, allowing the treatment to be reviewed for those with SMA Types 2 and 3 through its new ultra-orphan appraisal process with the prospect of it being made available for at least three years while further outcome data is gathered.
NICE announce Committee Meeting on 6th March 2019
01 February 2019 / Posted in: Treatments & Research
This will be the third meeting to review whether NICE will recommend nusinersen for funding by NHS England. This meeting will be in Manchester again. As soon as we have more details we will let you know.
MDUK's Benefits and Grants Survey
31 January 2019 / Posted in: Information, Support
Muscular Dystrophy UK's ‘Focus on Disability Benefits’ campaign aims to ensure that people with neuromuscular conditions can access fair and informed assessments for support that meets their needs. This survey is about your experience of the application process for any benefits you receive.
Send some love to SMA UK this Valentines
30 January 2019 / Posted in: Help Us
We have partnered up with Dontsendmeacard.com to offer Valentines e-cards for your loved ones
Marathon in May for SMA is back!
24 January 2019 / Posted in: Help Us
We are extremely excited to be launching our first ever virtual event – Marathon in May for SMA – and we hope that as many of you as possible will be able to take part.
Ask Your MP to Speak in Debate on Support for Children with Life-limiting Conditions
24 January 2019 / Posted in: Information, Support
Together for Short Lives are asking people to write to their MPs to ask them to speak in this debate. The meeting will take place at 9:30am on Tuesday 29 January 2019 in Westminster Hall.
New Campaign: Make Cervical Cancer Screening Accessible For Disabled Women
24 January 2019 / Posted in: Information, Support
Fiona Anderson, a wheelchair user who has a muscle-wasting condition, has set up a petition to ensure disabled women have equal access to cervical cancer screening - this includes by making hoists available at every NHS medical centre.
Find out about our fundraisers
24 January 2019 / Posted in: Help Us
Some of our Fundraising Teams and Fund Holders have been sharing their thoughts with us on their experiences of fundraising for SMA.
