NFL star, Clay Matthews, has lent his support to raising awareness of Duchenne muscular dystrophy (MD). The Green Bay Packers outside linebacker told reporters at the Players’ Tribune that he first became aware of the disease when he was asked to film a promotional video for the Care Duchenne foundation.
The study of rare diseases is typically short-changed with research funding, and the creation and sharing of tools to fight these disorders is the mission of a new initiative launched at the University of North Carolina at Chapel Hill. The UNC Catalyst for Rare Diseases project, funded…
Researchers found notable differences in the access to appropriate care for Duchenne’s muscular dystrophy (DMD) patients in seven European countries. In a survey known as CARE-NMD, patients in DMD registries in the countries —  Bulgaria, the Czech Republic, Denmark, Germany, Hungary, Poland and the United Kingdom — were questioned as to care…
https://www.youtube.com/watch?v=wsASIV_fiMo In this video from Michelle Durante, we see demonstrations of exercises designed to help muscular dystrophy patients. Michelle talks about some of the types of muscular dystrophy and how adapted exercises can help slow the progression of the disease. Find out more about the nine different types…
Lisa and Amy Howe are 19-year-old twins who live in Auckland, New Zealand. But while they may look alike and share many of the same characteristics, there is one main difference between the two. At the age of 14, Lisa was diagnosed with a form of muscular dystrophy which affects…
Children with special healthcare needs, such as those with muscular dystrophy (MD), benefit from at-home care, but at high costs to their families. In fact, uncompensated medical care in the U.S. costs theses families up to $36 billion annually, a new comprehensive national study reported. The study, published in…
A European Medicines Agency (EMA) committee is beginning a review of  Sarepta Therapeutics‘ request for conditional approval of eteplirsen as a treatment for Duchenne muscular dystrophy (DMD) patients with a confirmed mutation of the dystrophin gene that can be overcome by exon 51 skipping. The Committee for Human Medicinal Products (CHMP) validated a Marketing Authorization application (MAA)…
Shared in September 2014, this heartwarming story from LOCAL 12 is all about the Baker family. Sadly, their son Logan died from muscular dystrophy at just 13 months old. However, Logan’s life was not in vain, and he was able to donate his organs. Children with DMD…
The Fundamentals of Caring is an excellent Netflix film that focuses on what it’s like to have muscular dystrophy as a teenager and what it’s like to be a carer. **Warning: the film contains explicit language** Find out what it’s like to live with a muscle degenerative…
Scientists are using the CRISPR-Cas9 gene-editing technique to excise the defective sequence of the gene underlying Duchenne muscular dystrophy (DMD) and replace it with the correct sequence for restoring healthy gene function in these patients. “We want to use genetically corrected stem cells to replace the stem cell pool and…
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