Understanding

Duchenne Muscular Dystrophy

Duchenne muscular dystrophy (DMD) is a rare X-linked genetic disorder affecting approximately 1 in 3,500 male children worldwide. Symptoms are first noticed during early childhood between the ages of three and six years. Numerous variations and related conditions make up the wide spectrum of conditions classified as muscular dystrophies that affect approximately 250,000 individuals in the U.S.  All muscular dystrophies affect the muscles of the body and differ largely in the type of muscles they affect and the severity of the disease. DMD is a progressive disease that causes gradual weakness and wasting of muscles throughout the body resulting in patients needing the support of a wheelchair by the time they are teenagers. Some patients go on to developing serious or life threatening complications including conditions related to the heart, lungs and digestive system. In some patients the ensuing respiratory conditions may result in the need of a ventilatory to assist with breathing.

 

Resources

Supporting Organizations

A diagnosis of DMD affects every facet of a patient’s life and while there are no treatments, supportive care is critical to helping the patient lead fuller lives. Connecting with advocacy groups can inform patients about experts in the field, support groups and ongoing research.  Some organizations supporting patients diagnosed with muscular dystrophies are listed below. Inclusion on this list is not an endorsement by Nurturing Neurons Guild.

201 Chicago Ave, #200

Minneapolis, MN 55415 USA

Phone: (952) 641-6100

Toll-free: (877) 263-5430

Email: info@childneurologyfoundation.org

Website: http://www.childneurologyfoundation.org

1400 Quail Street, Suite 110

Newport Beach, CA 92660 USA

Phone: (949) 872-2552

Email: info@cureduchenne.org

Website: http://www.CureDuchenne.org

 
 

161 N. Clark

Suite 3550

Chicago, IL 60601 USA

Phone: (520) 529-2000

Toll-free: (800) 572-1717

Email: ResourceCenter@mdausa.org

Website: http://www.mda.org/

401 Hackensack Avenue, 9th Floor

Hackensack, NJ 07601 USA

Phone: (201) 944-9985

Toll-free: (800) 714-5437

Email: info@parentprojectmd.org

Website: http://www.parentprojectmd.org

 

Emory University, Department of Human Genetics

2165 N. Decatur Road

Atlanta, GA 30033

Phone: (404) 778-0553

Email: coordinator@duchenneconnect.org

Website: http://www.duchenneconnect.org

Linhartova 1

SI-1000 Ljubljana

Slovenia, GAR 04 Malta

Phone: 386014720500

Email: info@eamda.eu

Website: http://www.eamda.eu/

 
 

PO Box 8126

Gaithersburg, MD 20898-8126

Phone: (301) 251-4925

Toll-free: (888) 205-2311

Website: http://rarediseases.info.nih.gov/GARD/

61 Southwark Street

London, SE1 0HL United Kingdom

Phone: (207) 803-4800

Email: info@musculardystrophyuk.org

Website: http://www.muscular-dystrophy.org

2345 Yonge Street Suite 900

Toronto

Ontario, M4P 2E5 Canada

Phone: (416) 488-0030

Toll-free: 8668

Email: info@muscle.ca

Website: http://www.muscle.ca

P.O. Box 5801

Bethesda, MD 20824

Phone: (301) 496-5751

Toll-free: (800) 352-9424

Website: http://www.ninds.nih.gov/

P.O. Box 7490

Nova Scotia, B4V 2X6 Canada

Phone: (902) 685-3961