SMDI International
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SMDI International
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S.M.D.I. International Newsletter & Access-Able Information
(mailed together)
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The Society's mail tells the stories of those helped by this information: Carol Perez USA "As a person with MD, your newsletter is a much needed breath of fresh air with no axes to grind and open to all MD issues internationally. The openess of your publication and breadth of coverage is very helpful to individuals living daily with a neuromuscular disorder." Molly D Martin U.K. "It is so important with these rare diseases, to get international viewpoints which are not available in the national association magazines. The cures will only come about by putting all the many strands of research together and your newsletter gives us hope that this can be done " Jeffrey Cassell Canada "I got your newsletter on Friday and found it quite informative. All the information on Gene therapy looks good, sounds like we are finally getting somewhere after all these years."
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ACCESS - ABLE INFORMATION A semi-annual disability information resource publication (previously a quarterly publication). Regular full articles and web sites are covered. The following are some of the topics covered in 1997 and 1998. These newsletters are still available. Handy hints has been very popular. The following publications also includes the articles, Neuromuscular Disorders On-Line. 1997, Vol 10, N0 1 Spring 97, Resources on the Internet, Travel, Handy Hints. 1997, Vol 10, No 2 Summer 97, Pain, Pain Go Away? Neuromuscular Diseases complicate choices of treatment for cramps, headaches and other forms of pains. Handy Hints and Doable Devices and resources, Indoors, Outdoors Home and Office. 1997, Vol 10, No 3 Fall 97, Anesthesia concerns, Hints on conserving energy. 1997, Vol 10, No 4 Winter 97, Resources - Internet, Education, Gardening, Wheelchair books, Audio and video tapes. 1998, Vol 11, No 1 Spring 98, Resources - Books, Guides, Videos, MDA, ALS guide, Coping with Prednisone, Radio Print, Accessible homes, Handicapped car rental, Toilet seat lift, Breathing/Ventilators, Ventilator resource, Frog breathing, FES (function electrical stimulation), Information centre, Phantom nasal mask, Ventilation videos. 1998, Vol 11, No 3 Summer 98, Resources - Medical Equipment Exchange, The MD Family Foundation, Which Ventilator to use, assisted cough, The In-Exsufflator cough machine. 1998, Vol 11, No 4 Fall 98, Resources - Wheelchair Tips, Accessories, Travel caregivers, Scoliosis and Seating, Books and Videos.
SMDI INTERNATIONAL NEWSLETTERS
A semi-annual publication by and for those concerned with muscular dystrophy or
the allied disorders, (previously published quarterly).
1997, Vol 11, No 1 Spring 97, Anaesthetics, people with neuromuscular disorders
must take care if they are to have a local or general anaesthetic.
Utrophin - Will it replace Dystrophin.
1997, Vol 11, No 2 Summer 97, Research updates, Myotonic MD, Review of booklet.
1997, Vol 11, No 3 Fall 97, News and Research Updates - Drugs, Gene therapy,
Books etc, Associations for Neuromuscular disorders.
1997, Vol 11, No 4 Winter 97, Friedreich's Ataxia drug trials, Facio Scapulo Humeral.
1998, Vol 12, No 1 Spring 98, Pain and Dietary issues, Clinical management of FA,
News and Research updates - NORD's European counterpart born, Changing vaccination
policy for Poliomyelitis, SMA past, present and future.
1998, Vol 12, No 3 Summer 98, Utrophin therapy update,
Research Updates - Albuterol helps in FSHD, LGMD Gene therapy,
Friedreich's Ataxia update, Mitochondrial disorders, Bone marrow cells make new muscle,
Improved Gene transfers, Heart problems in Emery-Dreifus MD,
Books - Clinical and Molecular Genetics.
1998, Vol 12, No 4 Fall 98, Research Updates - Benefits of DNA diagnosis,
Myotonic dystrophy probed, Periodic Paralysis, Gene therapy and muscle -
trials target membrane, Proteins linked to MD's, Gene therapy and the DGC,
Adenoviruses carry large genes.
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