04 May 2017 / Posted in: Information & Support
This year, Together for Short Lives will be turning up the volume on children’s palliative care to raise awareness. Find out how you can get involved.
03 May 2017 / Posted in: Our Community
Lidia, Maddison's mum, shares their family's thoughts and experiences in this SMA Voices piece about Maddison who was diagnosed with SMARD at 9 months and is now 8 years old.
27 April 2017 / Posted in: Information & Support
Calling all individuals, families and professionals. Please tell us what you think about current services and give your thoughts on our future direction in our survey. Closing date for responses is 5pm on Friday 26th May 2017.
26 April 2017 / Posted in: Research
Cytokinetics has announced that it has initiated enrolment of a second cohort of SMA patients with SMA Types 2, 3 or 4 in their phase 2 clinical trial of CK-2127107, in North America.
25 April 2017 / Posted in: Research
Biogen and Ionis Pharmaceutical have released information on the CHERISH and NURTURE clinical trials of their gene therapy drug, Spinraza (formerly nusinersen).
21 April 2017 / Posted in: Research
The Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA) has recommended the marketing approval of nusinersen.
18 April 2017 / Posted in: Research
This new research article looks at recent research into different aspects of spinal surgery, in the treatment of scoliosis in Spinal Muscular Atrophy.
13 April 2017 / Posted in: Research
Biogen have set out their reasoning for this decision. We understand many families will be bitterly disappointed by this news.
12 April 2017 / Posted in: Our Community
Ross Lannon is 23 years old and has Spinal Muscular Atrophy Type 2. He has written an SMA Voices for our website that describes his recent trip to the Calvert Trust in Exmoor with a group of friends.
06 April 2017 / Posted in: Research
Today, seventy clinicians, physiotherapists, study coordinators, industry and advocacy groups' representatives, including SMA Support UK, outline their position and recommendations to NICE, NHS England's Care and Clinical Reference Groups (CRGs), NHS Trusts and Biogen.