The Great Ormond Street Hospital in London, England has teamed up with pharmaceutical giant, Biogen, to offer infants with spinal muscular atrophy (SMA) type 1 treatment using the drug Nusinersen (Spinraza) under their Expanded Access Program until the drug becomes licensed in the U.K. MORE: Five things to consider…
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Spinal muscular atrophy (SMA) is a genetic disease where, over time, the muscles become weakened. In cases of SMA type 1 and SMA type 2, weakened chest muscles affect the child’s ability to breathe, so you will need to have some items of respiratory equipment in your home so that you…
It’s important to continue to raise awareness of spinal muscular atrophy (SMA) and of course, to raise money for vital research into improving treatment, better understanding of the disease, and working towards finding a cure. MORE: Why physical activity is important if you have SMA. There are many different types…
The whole world has been following the heart-wrenching story of 11-month-old Charlie Gard from England. The infant was born in August and 10 weeks later, tested positive for an extremely rare form of mitochondrial depletion syndrome. MORE: Caring for a child with SMA when they have a cold. The parents have…
According to Cure SMA, there are several areas of care that need to be taken into consideration when looking after a child with spinal muscular atrophy (SMA) when they have a cold. These areas include: Evaluating mucus buildup and secretion mobilization When children with SMA have a cold,…
Spinal muscular atrophy (SMA) is a disease which few people of heard of until it enters their lives. Sadly, this genetic condition is often life-threatening and to date, researchers haven’t been able to develop a cure. MORE: Five areas that need to be carefully managed in SMA patients Raising…
Spinal muscular atrophy (SMA) is a genetic disease that causes muscle weakness. According to Spinal Muscular Support UK, there are various forms of the disease that affect different parts of the body and vary in severity. We’ve put together a list of some of the rarer forms of the disease: Distal…
According to the Muscular Dystrophy Association of New Zealand, there are some vaccinations that all people who have a neuromuscular disorder should have on an annual basis, as well as other considerations to make about vaccinations. MORE: Spinal cord delivery options for SMA drugs and treatments.
With the costs of therapy on the rise, it’s no wonder that some people have started looking to group therapy as an alternative. According to the American Psychological Association (APA), clinical trials have begun to demonstrate the effectiveness of group therapy, suggesting that it works…
Spinal muscular atrophy (SMA) is a rare neuromuscular disorder that causes a loss of motor neurones and muscle, often causing premature death in patients. Being diagnosed, or being a parent of a child diagnosed with SMA can be daunting. Here’s a list of helpful and informative books for patients, parents…
