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Some of the sources of information we've found on the Internet. Some of these are about MTM specifically, some about other related topics. Articles about MTM An overview of myotubular myopathy written by Dr. Carina Wallgren-Pederson. (We finally got this link fixed!.) The article is a few years old and is mainly intended for diagnostic purposes. It gives a good overview MTM and of much of the research of the last several years. It also contains some useful links.
MDA (USA) "Ask the Experts" series on myotubular myopathy -- Very informative; some of the info here is available nowhere else. (This feature alone is reason enough to support MDA!) MDA (UK) Overview on myotubular myopathy -- A good overview although we don't completely agree with them on outcomes and treatment.
Neuromuscular Diseases and Organizations. Muscular Dystrophy Association, USA - These are the folks helping fund myotubular myopathy research. Ignore what you hear elsewhere, Jerry Lewis is our hero! Muscular Dystrophy Association, Australia -- A very, very good site with lots of information and lots of links to good information. Handitel Database-- A good collection of references to many organizations
OMIM -- On-line Mendelian Inheritance in Man, ; The Human Genome Data Base Project, Johns Hopkins University; Baltimore, MD; -- Up to date overviews of many, many diseases. (Although we disagree with some of what they say about myotubular myopathy.) Cambridge University Genetics Library -- lots of genetic information at this site. Rare Genetic Diseases in Children: An Internet Resource Gateway -- Lots of information about a wide variety of rare diseases. Global Forum on Genetic Engineering -- An open forum discussion on some of the major questions concerning genetic engineering and gene therapy. Sponored by the Japanese Broadcasting Corporation (NHK). References on Other Disabilities and Rare Diseases National Organization for Rare Disorders - NORD -- Information about lots of rare diseases.
References on General Disability Issues or Therapies Vent Users Digest -- A mailserver with lots of good, practical information on managing ventilators and related issues. Exceptional Parent -- "The" magazine for families that have children with disabilities. Hope Therapy at Moody Gardens -- A wonderful program run by a bunch of wonderful people. Mobility Opportunities Via Education (MOVE) -- An organization dealing with mobility issues for handicapped children and adults. Lots of good information. Internet Resources for Special Children -- Lots on information and resources MetDESK -- Metropolitan Life's website on financial planning for families with special needs children. Sure they're trying to sell some of their products but there's still some good information there. Dynamic Orthotics -- Our friend and orthotist Tom Dibello and his firm are the among the very best medical professionals we have run across in any field. This site contains a lot of good information on orthotics and prosthetics.
Hogward's Pen -- Our friend and neighbor Howard Clayton's page about motorcycles, philosophy and other topics unrelated to this site. But since he's nice enough to link to us, we are returning the favor. (Besides, he gets a lot more hits than we do.)
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