Sometimes my body wakes me up and says ‘Hey, you haven’t had pain in a while. How about pain?’ And sometimes I can’t breathe, and that’s hard to live with. But I still celebrate life and don’t give up - Mattie Stepanek
image by: Muscular Dystrophy UK
Congenital muscular dystrophies encompass a group of diseases whose main feature is the degeneration of muscles: progressive muscle weakness and muscle wasting. Symptoms appear at birth or early during infancy. Children’s motor development—such as head control, sitting freely or crawl-ing—is delayed or not completed. In some cases, muscle weakness is so severe that no movement against gravity is possible. Depending on the type of CMD, muscle weakness also affects organs such as the lungs or the heart and leads to a shortened life expectancy. In some types, the central nervous system is affected.
The various types of CMD have different causes. The disease can be triggered by rare variants in genes. Scientists distinguish between variants of the disease according to which gene sequences are affected and what the corresponding consequences are at molecular and cellular level.
Muscular Dystrophy News is a digital news publication dedicated to offering comprehensive daily news coverage of MD.
Cure CMD’s mission is to bring research, treatments and in the future, a cure for the Congenital Muscular Dystrophies that have a profound affect on children as young as birth.
We are the world's largest and most progressive grassroots network of facioscapulohumeral muscular dystrophy patients, their families and research activists. The FSH Society harnesses the power and insight of a patient-driven model, as it was founded on a promise between two research scientists with FSHD never to let the disease be forgotten or neglected. We are a cause without borders.
The Jain Foundation's mission is to cure muscular dystrophies caused by dysferlin protein deficiency. These dystrophies are collectively termed dysferlinopathy, and include Limb-girdle muscular dystrophy type 2B and Miyoshi muscular dystrophy 1. Dysferlinopathy is an orphan disease afflicting approximately 5 people/million and receives little or no funding from traditional sources.
Since 2001, the Jett Foundation, located in Kingston, MA, has worked to find treatments and a cure for Duchenne muscular dystrophy while improving the lives of those affected by DMD. Over the past decade, the Jett Foundation has raised almost 2 million dollars for Duchenne research. The foundation currently funds the Jett Program for Pediatric Neuromuscular Disorders at Mass General Hospital for Children. The Jett Foundation provides resources for treatments and adaptive activities as we work toward a cure and treatments for Duchenne.
The Muscular Dystrophy Association is a voluntary health agency -- a dedicated partnership between scientists and concerned citizens aimed at conquering neuromuscular diseases that affect more than a million Americans.
Muscular Dystrophy Canada is a not-for-profit organization committed to finding a cure for neuromuscular disorders through well funded research. Muscular Dystrophy Canada’s dedicated volunteers and staff across the country raise funds to enhance the lives of those affected by over 150 different kinds of neuromuscular disorders by continually working to provide ongoing support and resources.
Through the life services of Advocacy, Education and Consultation, Muscular Dystrophy Family Fund will enhance and strengthen the lives of individuals with neuromuscular diseases and to provide, or direct their families to valuable resources in helping our clients become successful contributors to the community.
We aim to find treatments and ultimately cures for muscular dystrophy and related conditions and improve the lives of all those people affected by them in the UK. We act to make a real difference for people affected by muscular dystrophy and related conditions.
The Myotonic Dystrophy Foundation is a non-profit organization founded in 2007 by families living with myotonic dystrophy. Through community support, education, advocacy, and research MDF is committed to enhancing the quality of life of people living with myotonic dystrophy, and maximizing efforts focused on treatments and a cure for DM.
Coalition to Cure Calpain 3 provides support for promising research into finding treatments or a cure for limb-girdle muscular dystrophy, type 2A/Calpainopathy (LGMD2A). The unrelenting nature of this disease takes its victims from full mobility to a wheelchair within 11-28 years after the onset of symptoms. LGMD2A attracts significantly fewer research dollars than other forms of muscular dystrophy and thus fewer researchers working to understand the disease and discover a cure.
Join Brad Miller who was diagnosed with Becker Muscular Dystrophy at just 10 years old, a condition which limits his ability to walk and gets progressively worse over time. He created the My Becker's Story blog in 2010 to share my story and to help raise awareness about Muscular Dystrophy.
Essays by Mark E. Smith, WheelchairJunkie.com
The Paul D. Wellstone Muscular Dystrophy Cooperative Research Center is exploring therapeutic strategies for the treatment of various muscular dystrophies by enabling translational research on muscular dystrophies and providing advanced diagnostic services. The MDCRC is composed of two research projects, three cores and investigators with a proven track record of excellence and collaboration.
Muscular dystrophies are a group of disorders that result in muscle weakness and a decrease in muscle mass over time. Some muscular dystrophies are not identified until a child is 3 to 6 years of age, but can be diagnosed earlier.
Muscular dystrophy is a genetic disorder that gradually weakens the body's muscles. It's caused by incorrect or missing genetic information that prevents the body from making the proteins needed to build and maintain healthy muscles.
In depth information about muscular dystrophy including further resources.
Information, research, clinical trials, articles and resources for muscular dystrophy from MedlinePlus.
Muscular dystrophy (MD) is a genetic (inherited) condition that gradually causes the muscles to weaken. This leads to an increasing level of disability.
The muscular dystrophies are a group of more than 30 genetic diseases characterized by progressive weakness and degeneration of the skeletal muscles that control movement. Some forms of MD are seen in infancy or childhood, while others may not appear until middle age or later.
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