Wolverhampton mum calls for decision on use of Spinraza – BBC News
The mother of an 11-year-old girl with a muscle-wasting disease is calling for health chiefs to speed…
Adapting to Change Creatively – SMA News Today
Spinal muscular atrophy (SMA) can cause a lot of things, including muscle weakness, fatigue, and pain. It’s…
Finding a Perfect Parking Spot: It’s Complicated – SMA News Today
We’ve all had some cruddy parking experiences. But when you have a disability, it’s usually a little…
The Power of a Platform – SMA News Today
I’ve been meaning to update my website for years, so I sat down in January with the…
New Hope for Young Children with SMA – Early Treatment is Key – MD Magazine
No parent wants to hear their pediatrician give this diagnosis, “Your child has spinal muscular atrophy (SMA).”…
My daughter is losing the ability to walk but she is being denied drugs that can help – Metro
As a parent you never want your child to be ill. And when they are, you want…
Six-month-old boy has just months to live after the NHS refuse to pay for a ‘miracle drug’ – Daily Mail
A six-month-old boy with a devastating genetic condition has been given just three months to live unless…
This gorgeous baby boy has only three months to live unless the NHS decides to fund a miracle drug – Manchester Evening News
Lying in the Intensive Care Unit of Royal Manchester Children’s Hospital, baby Haris Khan listens to some…
British MP Pushes to Make Spinraza Treatment Available for SMA Patients – SMA News Today
Citing the deteriorating health of a child with spinal muscular atrophy (SMA), a member of the British…
Scotland Opens Spinraza to All SMA Patients Using Its Public Health System – SMA News Today
Scotland has joined the growing roster of countries making the spinal muscular atrophy (SMA) therapy Spinraza available…
Drugs company urged to ‘do the decent thing’ and help Forest Gate baby facing a death sentence – Newham Recorder
Lyn Brown spoke out in parliament this week about the heartache a family from Forest Gate face…
Our Family Photo Album Sparks Memories of SMA Challenges – SMA News Today
It was time to take down the Christmas decorations. Every room was filled with boxes and coffee…
Couple tackle disability ‘misconceptions’ with YouTube channel – Belfast Telegraph
A man with muscular dystrophy and his able-bodied girlfriend are sharing their relationship with the world on…
Pitching In When a Family Member Is Out of Commission – SMA News Today
It takes a family to navigate SMA. All five of us play a role in helping the…
Technology Has Improved Quality of Life for Those with SMA – SMA News Today
Technology is a wonderful thing. It’s something that is a part of all of our lives and…
Disabled man and able-bodied girlfriend want to show their love to the world – Mirror Online
A disabled man and his able-bodied girlfriend want to show off their love to the world. Shane Burcaw,…
Top 10 SMA Stories of 2018 – SMA News Today
SMA News Today brought you daily coverage of important findings, key treatment developments and clinical trials related…
Roche drug shows benefit in spinal muscular atrophy – BioPharma Dive
Dive Brief: Fresh results from two studies of Roche’s experimental oral therapy for spinal muscular atrophy (SMA) support…
Babies with spinal muscular atrophy to be covered for life-saving but costly Spinraza drug – The Globe and Mail
Canadian children with a rare and often fatal neuromuscular disorder are about to gain public funding for…
Northampton mum’s plea to NHS to fund rare drug to change son’s life – Northampton Chronicle and Echo
A Northampton mum-of-one is urging the NHS to pay for a rare drug needed to keep her…