The Financial and Work-Related Impact of Living with SMA Type 1, 2 or 3 for Unpaid Carers
05 March 2019 / Posted in: Treatments & Research
Thank you to all who responded to this survey, and to Wickenstones for their analysis. The results and the results of our survey last year about the impact of SMA are now available and are being used to inform Biogen’s continuing work with NICE re: access to nusinersen. Read the results summary here.
Letter Written By Clinicians Highlights Frustrations Around Spinraza Access
04 March 2019 / Posted in: Treatments & Research
The letter, published in The Guardian, highlights the clinicians’ frustrations at Spinraza not being made available on the NHS in England, Wales and Northern Ireland.
SMA UK Calling for Urgent Access to Nusinersen
04 March 2019 / Posted in: Treatments & Research
On Wednesday 6th March, we will be at NICE’s third committee meeting working hard to express the urgent need for a positive recommendation.
'Time is Running Out' - Please send this powerful handout and template letter to your MP today
26 February 2019 / Posted in: Treatments & Research
A huge thank you to all who personally gave copies of these and spoke about their lives to MPs at yesterday's Access to nusinersen parliamentary drop-in session. You can contact your MP, asking them to use these to write to NICE, Biogen and NHS England
Join Ride Scorpion for SMA
25 February 2019 / Posted in: Help Us
Join us on 18th May to cycle the Cotswolds and raise vital funds to support people living with Spinal Muscular Atrophy.
Marathon in May for SMA is back!
24 February 2019 / Posted in: Help Us
Our virtual event – Marathon in May for SMA – is back and we hope that as many of you as possible will be able to take part.
Your help needed to find health professionals to take part in study into costs and treatment of SMA
22 February 2019 / Posted in: Treatments & Research
A biotechnology company is investigating a new treatment for SMA and wants to arrange interviews with health visitors, community nurses, physios, OTs, nurses in neurology wards, nutritionists, neurologists and pulmonologists who have seen a minimum of 2 patients with SMA Type 1, 2 or 3 in the last 12 months. Please pass this request on to the health professionals who support you to see if they wish to get involved.
SMA UK Activity During the Week of Rare Disease Day
22 February 2019 / Posted in: Treatments & Research
Monday, we’re at the Parliamentary 'drop-in' session about access to nusinersen; Tuesday, our Scientific Research Correspondent will be attending Royal Holloway’s Rare Disease Day event; on Rare Disease Day itself, we’ll be at a Cambridge Lecture evening about research and have a a notice in the Guardian Rare Diseases supplement.
UK SMA Research Day 2019
21 February 2019 / Posted in: Treatments & Research
Hosted at Keele University in Keele Hall, the latest UK SMA researcher meeting was organised and chaired by Dr. Melissa Bowerman on Wednesday 23rd January 2019. Scientists of all career stages representing many UK research institutions were in attendance for a full day of excellent presentations on SMA. Read this summary by our Scientific Research Correspondent, Dr James Sleigh.
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.