MUSCULAR DYSTROPHY ORGANIZATIONS

 

 

MDA--Muscular Dystrophy Association

800-572-1717

3300 E Sunrise Dr

Tucson, AZ 85718-3299

www.mdausa.org

www.mda.org

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Offers services for adult, children and families dealing with muscular dystrophy

  • A nationwide network of 235 hospital affiliated clinics staffed by top neuromuscular disease specialists offering diagnosis and follow up care
  • MDA summer camps for kids with neuromuscular disease
  • Professionally facilitated support groups for those affected, spouses, parents or other caregivers
  • Assistance with purchase and repair of wheelchairs and leg braces
  • Assists with the purchase of communication devices
  • Evaluations for physical, occupational, speech and respiratory therapy
  • Flu shots to help protect the respiratory system
  • Equipment loan closets
  • Health education program including speakers, seminars, videos, newsletters and more

Publishes Quest magazine which includes articles about research findings, medical and day to day care, helpful products and devices and social and family issues, etc.

Muscular Dystrophy Family Foundation

317-615-9140
  P O Box 776
Carmel, IN 46082
www.mdff.org

Muscular Dystrophy Family Foundation's No Boundries program provides resources, services, and adaptive equipment to enable patients with muscular dystrophy and their family members to live independent and productive lives.

DuchenneConnect

404-778-0553

http://www.duchenneconnect.org

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Emory University, Department of Human Genetics
2165 N. Decatur Road
Atlanta, GA 30033

The mission of DuchenneConnect is to provide resources to help individuals with Duchenne and Becker muscular dystrophy and their families understand the steps that may be required to confirm the diagnosis, and the benefits and limitations of genetic testing. The program works with regional and local resources where possible. DuchenneConnect allows participants to join the Registry to access services such as genetic counseling and genetic testing, and resources to assist in the understanding and development of new treatment trials in Duchenne/Becker muscular dystrophy. Becker muscular dystrophy is in the category of inherited muscle wasting diseases caused by a gene abnormality (mutation) that results in deficient or abnormal production of the dystrophin protein (dystrophinopathies). Duchenne muscular dystrophy (DMD) is characterized by weakness and wasting (atrophy) of the muscles of the pelvic area followed by the involvement of the shoulder muscles. As the disease progresses, muscle weakness and atrophy spread to affect the trunk and forearms and gradually progress to involve additional muscles of the body.