Posts

Showing posts with the label News

Stay Healthy This Respiratory Season: Flu, RSV and COVID-19 Tips for Muscular Dystrophy Families

Image
Written by the Muscular Dystrophy Pakistan (MDP) content team. Based on guidance from Parent Project Muscular Dystrophy (published October 5, 2026), the US CDC and published care guidelines (see sources below). Published: October 17, 2026. As schools are in session and winter approaches, respiratory viruses such as influenza (flu), RSV and COVID-19 spread more easily. For most people, these infections are a few days of illness. For people with muscular dystrophy, whose breathing and coughing muscles may be weak, they can be much more dangerous, because weak muscles make it harder to clear mucus and fight infection. Parent Project Muscular Dystrophy has just published guidance for Duchenne and Becker families on how to prepare, and the same principles are widely useful for people with other muscular dystrophies whose breathing muscles are affected. This article puts that advice in simple words and adapts it for families in Pakistan. For more on these two conditions, read our guides ...

Eteplirsen (Exondys 51) for Duchenne: Price, Availability and Access in Pakistan

Image
Written by the Muscular Dystrophy Pakistan (MDP) content team. Based on regulatory, company and news sources listed below. Prices and availability were checked on October 16, 2026 and can change. Few medicines have been discussed as much in the Duchenne community as eteplirsen , sold as Exondys 51 . Families see it described as the first approved medicine for Duchenne, then see a price of hundreds of thousands of dollars a year, and then ask a painful question: "Can my child get it in Pakistan?" This article gives a clear, honest answer to the questions we hear most: what eteplirsen is, who can use it, what the evidence shows, how much it costs, where it is available, whether it can be brought to Pakistan, how the cost might be reduced, and what the government can do. Quick facts Eteplirsen is a weekly intravenous (IV) infusion for boys whose genetic report shows a change in the DMD gene that is amenable to exon 51 skipping , about 13% to 14% of people with Duchenne. ...

Muscular Dystrophy UK Funds New Research at Cardiff University for a Rare Muscle Condition

Image
Written by the Muscular Dystrophy Pakistan (MDP) content team. Based on a news report from Herald.Wales (see sources below). Published: October 11, 2026. Rare muscle conditions often have no treatment at all, partly because they affect so few people that research money rarely flows towards them. That is why news of new funding matters, even when it comes from far away. In September 2026, the UK charity Muscular Dystrophy UK announced that it is investing £1.5 million in ten new research projects across England, Scotland and Wales. One of them, at Cardiff University, focuses on a rare condition called ADSS1 myopathy. This article explains the news in simple words and what it means for patients around the world, including in Pakistan. Quick facts Muscular Dystrophy UK announced £1.5 million for ten new research projects in England, Scotland and Wales. One project at Cardiff University is a four-year PhD led by Dr Fabrizio Pertusati, a lecturer in medicinal chemistry. It targets...

Duchenne Muscular Dystrophy Survival Has Risen from 19 to 29 Years: What the New Analysis Means

Image
Written by the Muscular Dystrophy Pakistan (MDP) content team. Based on a study published in the Journal of Neurology (2026) and a news report on it (see sources below). Published: October 11, 2026. For decades, families facing a Duchenne muscular dystrophy diagnosis were given a heavy number: most boys would not live beyond their late teens or early twenties. A new analysis published in the Journal of Neurology in October 2026 shows how much that picture has changed. By combining the results of dozens of studies, researchers found that median survival in Duchenne has climbed from about 19 years to nearly 29 years, and the study points to the reasons: better breathing support at home and better heart care. This article explains what the study found, what it does not tell us, and what it means for families in Pakistan. Quick facts The study was led by researchers at University Hospital Zurich and combined 53 earlier studies with more than 13,000 patients. In groups that includ...