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…
Mother in NHS plea for spinal muscular atrophy drug – BBC News
A mother whose six-year-old son has a rare muscle wasting disease says his future is dark if…
Derby twins, 13, make desperate plea for new drug that could prolong their lives – Derbyshire Live
A disabled boy says he and his twin brother should be given access to a new drug…
Why are our children being denied life saving treatment? – Manchester Evening News
Catching the slightest cold could put Jacob O’Neill in hospital for three weeks. He suffers from Spinal Muscular…
Outrage as ‘miracle’ drug too expensive for NHS – The Argus
A “MIRACLE” drug which could help thousands of people with a lifelong genetic condition is not going…
Surf dog Ricochet paddles out with kids suffering from spinal muscular atrophy – CBS 8 San Diego
Ricochet the surf dog is hanging paw again, this time he is surfing with kids suffering from…
Spinal muscular atrophy: How can recent breakthroughs get patients moving again? – Medical News Bulletin
A review of the current treatment options for spinal muscular atrophy is presented by a UK team…
The case of Spinal Muscular Atrophy: Deadly inherited diseases start to yield – Tri Corner News
Part I of 2 A few years ago, a friend asked me if I could take over a…
Teenager with degenerative muscle disease struggles to swallow food or even cough – Bristol Live
A teenager who suffers from a rare degenerative muscle disease struggles to cough or even swallow his…
Instagram blogger inspires others with disabilities to enjoy colourful fashion – The Independent
The fashion industry has been making strides in recent years to become more inclusive and diverse. However, it…
Scientists investigate new strategy to treat spinal muscular atrophy in infants – The Scripps Research Institute
Spinal muscular atrophy (SMA) is a genetic disease that can leave infants with weak muscles and trouble…
Scientists investigate new strategy to treat spinal muscular atrophy in infants – Medical Xpress
Spinal muscular atrophy (SMA) is a genetic disease that can leave infants with weak muscles and trouble…
Health chiefs urged to approve life-changing drug for Muscular Dystrophy patients – The Scottish Sun
PATIENTS with a genetic condition could lose the ability to move, breathe and swallow unless health bosses…
Bath Half Marathon: These inspirational people from Midsomer Norton and Radstock are running in aid of local charities – Somerset Live
Local people are currently gearing up to prepare for the Bath Half Marathon – and it is…
Mother’s plea for drug which could help her disabled son – ITV News
A mother from Welwyn Garden City is urging the NHS to allow the use of a drug…
Spinal muscular atrophy (SMA) patients could get access to drug earlier than expected – Daily Mail
Patients with the devastating genetic condition, spinal muscular atrophy (SMA), could gain access to vital treatment earlier…
Have Scientists Found a Treatment for Spinal Muscular Atrophy? – Medical News Bulletin
Spinal muscular atrophy often leads to an inability to breathe or death. Researchers tested a new gene therapy for the disease. Spinal muscular atrophy…
Most people in favor of screening for spinal muscular atrophy – Science Daily
Research from the University of Warwick indicates that most people are in favour of newborn screening for the potentially deadly condition spinal muscular…
Nusinersen Improves Motor Function, Survival in Infants With Spinal Muscular Atrophy – Neurology Advisor
Infants with spinal muscular atrophy who receive nusinersen experience greater survival and motor function improvement compared with controls, according to findings from a…
Gene therapy could cure Spinal Muscular Atrophy – ABC Online
A criticism is often levelled at pharmaceutical companies that they don’t seek to cure diseases – they only seek to find a long-term…
New drug enables infants with genetic disorder to live longer, gain motor function – Science Daily
Infants with the most severe form of spinal muscular atrophy (SMA) were more likely to show gains in motor function and were 47…
Most would-be parents who carry severe genetic disorders are unaware – The Age
Nearly 90 per cent of couples at risk of having babies with devastating genetic conditions have no family history of the disorders and…
Acadiana family fighting to find a cure for Spinal Muscular Atrophy – KATC Lafayette News
Spinal Muscular Atrophy is a genetic disorder that affects the control of muscle movement. It affects crawling, walking,…
Family fundraising for new wheelchair so 3-year-old girl can go to school – Bath Chronicle
Family and friends are fundraising to buy a three-year-old girl a new wheelchair for her birthday. Isabel Freeman from Midsomer Norton is unable to…
Charity’s fears over cuts applied to patient’s healthcare budget – Norfolk Eastern Daily Press
Muscular Dystrophy UK has told Norwich Clinical Commissioning Group (CCG) its patients deserve clarity after 39-year-old Kirsty Read looked into the money she…
Stratford District Council retains Disability Confident Employer status – Stratford upon Avon Herald
STRATFORD-ON-AVON District Council has retained its Disability Confident Employer status until 2019. To achieve this standard the council has shown a commitment to support…
Iowa State University biomedical researcher conducts promising trial of potential therapy for spinal muscular atrophy – Iowa State University
A drug developed by an Iowa State University biomedical researcher as a potential treatment for spinal muscular atrophy showed promising results in a…
11 Fast Facts About Spinal Muscular Atrophy – SMA News Today
How much do you know about spinal muscular atrophy (SMA)? It’s a genetic disease that progressively weakens the muscles of babies and small…
Spinal muscular atrophy drug gives new hope for babies with cruel disease – ABC Online
Spinal muscular atrophy, or SMA, is one of those diseases you probably will not hear about until it affects someone you love. Then…
Desktop 3D Printer Produces Arm Brace for Child with SMA – Machine Design
A child living in Poland was the recipient of a 3D-printed hand exoskeleton that would help him to perform everyday tasks while living…
‘We don’t know how long we’ve got her for’: First-time parents share anguish as they spend their final moments with their terminally ill baby daughter born with a rare muscle-wasting disease – Daily Mail
A young couple has opened up about their anguish as they spend whatever time they have left with their terminally ill baby daughter. Sydney…
Family’s debt because they can’t pay electric bill to keep daughter alive – Metro
A family say they are running into debt because of the high energy bills to keep their daughter alive. Maddison Sherwood has a rare…
Top 5 Reads for Spinal Muscular Atrophy Patients and Caregivers – SMA News Today
Spinal muscular atrophy (SMA) is a rare neuromuscular disorder that causes a loss of motor neurones and muscle, often causing premature death in…
Disabled man who can barely move jailed for armed robbery – Metro
A severely disabled man who can barely move has been jailed for armed robbery in a case that has sparked outrage in Russia. Anton…
Disney appeal launched for ‘miracle girl’ – Loughborough Echo
THE PARENTS of an eight year old “miracle girl” from East Leake have started an appeal to try and make their little girl’s…
First-time mother, 33, shares her anguish as she spends her final months with her terminally ill baby girl – Daily Mail
Like many first time parents, for Rachael and Jonathan the arrival of their first-born child 14 weeks ago was a special and memorable…
Nusinersen approved in the EU as first treatment for spinal muscular atrophy – Hospital Healthcare Europe
The European Commission (EC) has granted a marketing authorisation for Spinraza® (nusinersen) for the treatment of 5q spinal muscular atrophy (SMA), Biogen has…