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Spinal muscular atrophy

31 Days of SMA: Employment and SMA – SMA News Today

31 Days of SMA⁣⠀ To start off SMA Awareness Month, we have Jaclyn Greenwood speaking on employment and…

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Wheelchair bound Bristol teen fighting ‘immensely cruel’ decision to bar him from life changing drug – Bristol Post

A Bristol teenager is in a fight against “discriminatory” and “immensely cruel” health guidelines that are barring…

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Hayes in the House: MP talks about his casework and focuses on spinal muscular atrophy – Spalding Today

In this spirit, when Tanya White contacted me about her daughter Rae’s medical needs, I learned a…

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Enhancing the Quality of Life for Patients with Spinal Muscular Atrophy – ThirdAge

Spinal Muscular Atrophy (SMA) is the umbrella term for a group of genetic disorders that cause muscle…

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Meet Jake – a 13-year-old theatre trailblazer – CBBC Newsround

Meet Jake. He loves the magic of theatre – the props, the costumes and bringing characters to…

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Biogen spinal muscular atrophy drug shows strong data in long-term follow-up – MedCity News

Updated Phase II data on a drug used to treat spinal muscular atrophy show strong efficacy among…

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Newcomer BillionToOne launches prenatal blood screener for cystic fibrosis, SMA and sickle cell – FierceBiotech

The company’s molecule-counting diagnostic test, Unity, searches for cell-free fetal DNA using…

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Campaign girl ‘ineligible’ for muscle wasting drug – BBC News

The family of a girl who campaigned for a drug to treat her muscle-wasting disease to be…

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New gene therapy poised to transform care for spinal muscular atrophy – Medical Xpress

The University of Rochester Medical Center (URMC) has been tapped as one of the first institutions in…

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Spinal muscular atrophy: Spinraza approval delights family – BBC News

The mother of a girl with a muscle-wasting disease is delighted a drug that may slow her…

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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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