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Spinal muscular atrophy

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…

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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…

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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…

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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…

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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).”…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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,…

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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…

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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…

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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…

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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…

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