The Society for Muscular Dystrophy Information International

P.O. Box 7490, Bridgewater,
Nova Scotia, B4V 2X6

Phone: (902) 685-3961
Fax: (902) 685-3962
Email: smdi@auracom.com



The Society for Muscular Dystrophy Information International (S.M.D.I International), is a non-profit registered Canadian charity.

The Society was formed to provide international information to help people help themselves by reducing the national and international isolation of people and organizations concerned with neuromuscular disorders/disabilities (muscular dystrophy and the over 50 allied disorders).

The following are some of these disorders:
*MUSCULAR DYSTROPHIES (11 different forms)

  • Duchenne muscular dystrophy
  • Becker muscular dystrophy
  • Facioscapulohumeral (FSH) muscular dystrophy
  • Limb-Girdle muscular dystrophy
  • Myptonic muscular dystrophy
  • Congenital muscular dystrophy
  • Fukuyama muscular dystrophy
  • Ophtalmoplegic muscular dystrophy
  • Distal muscular dystrophy
  • Oculopharyngeal muscular dystrophy
  • Emery-Dreifuss muscular dystrophy

  • Spinal muscular atrophies
  • Diseases of peripheral nerve
  • Diseases of neuromuscular junction
  • Inflammatory myopathies
  • Myotonias
  • Metabolic or endocrine diseases of muscle
  • Congenital myopathies
  • Other disorders
It should be noted that under each of the above headings, there are many different kinds of that specific disorder, (approximately 65 at this time, and more are being discovered all the time as research continues.)

The Society for Muscular Dystrophy Information International (S.M.D.I International) is a registered Canadian charity founded in 1983 by James and Linda Dobson; to provide a non-technical information link for neuromuscular patients and organizations around the world.

Mr. Dobson has a type of neuromuscular disorder. It is general term used to identify a group of over 50 diseases affecting the body's motor unit (nerves and muscles).

Whether the problem originates with the motor nerve cell, the nerve, or muscle, the most commonly express symptoms are varying degrees of progressive muscle weakness and wasting. Symptoms can be from mild to severe with a shortened life expectancy.

Knowing personally the feeling of devastation and emotional isolation of being diagnosed with an incurable rare disorder, the Dobsons wanted to learn what was being done worldwide about neuromuscular disorders. Unable to find information or addresses in Canada, they wrote 1,000 letters to 128 countries. They were amazed, enlightened, and helped to find so many wonderful people and organizations publishing books, magazines, reports, funding research, providing client services and education concerning the different neuromuscular disorders.

Motivated by the belief in power of this information to help people, the Society was formed to help people share information and:

  1. To link people with people and organizations concerned with their disorder
  2. To share information to help people help themselves
  3. To create public awareness of neuromuscular disorders/disabilities and the world's organizations & support groups for the disorders.
To achieve these aims, The Society publishes two quarterly newsletters:
  • S.M.D.I. INTERNATIONAL NEWSLETTER
    A publication by and for those concerned with muscular dystrophy or the allied disorders and,

  • ACCESS-ABLE INFORMATION
    a quarterly disability information resource publication.


S.M.D.I. International publishes quarterly:

S.M.D.I. INTERNATIONAL NEWSLETTER with an insert ACCESS-ABLE INFORMATION. Non-technical neuromuscular disorder/disability information by and for those concerned with muscular dystrophy or the over 50 allied disorders. For example, topics include: Reports on different disorders; research; world organizations; gene and myoblast research; ventilation; book reviews; controlling stress; travel; handy hints; aids & adaptations; pain management; What's New, etc.

Publications to promote and encourage organizations and people concerned with muscular dystrophy or the allied disorders to work together for the common good of all.

The Society's mail tells the stories of those helped by this information; many like the Dobsons, feeling alone, desperately seeking information about incurable diseases and contacts for their disorders.

The Society's continued existence and publications depends on contributions toward receiving the Society's publications.

Usual contribution: Individuals--$25 Organizations--$35
Please support S.M.D.I. International's efforts to help.

Canadian, U.S., or British funds acceptable. Please make out cheque or money order payable to S.M.D.I. International and mail to:

The Society for Muscular Dystrophy
Information International

P.O. Box 7490, Bridgewater,
Nova Scotia, B4V 2X6

Phone: (902) 685-3961
Fax: (902) 685-3962
Email: smdi@auracom.com


nsnet.org
Supported by
Kings Regional Rehabilitation Centre
Technical Resource Centre