| Other Links Related To Mitochondrial-Related Disorders, Rare disorders and Disabilities |
Description |
| MELAS Primer 1999, Volume 4.2 |
This PDF format publication contains an explanation of the MELAS Syndrome in layman's terminology. It also includes a technical paper on glucolysis and the workings of the mitochondria. |
| MELAS Syndrome Patient History, Volume 2.0 |
This PDF format publication contains an abbreviated version of my wife's medical history as an individual with the full form of the MELAS Syndrome, a mitochondrial disorder. |
Former "MON Index Listing of Search Results" Archives
| The search results that were formerly available at the MELAS Online Network are now available as downloads. They are in zipped archives that include the three graphics files that are needed to properly view the HTML document format. You will need an unzipping utility application and an Internet Browser in order to view the files. |
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| Mitochondrial Internet Search Keywords |
A list of 125 keywords that can be used for doing Internet-based searches for information on mitochondrial-related disorders. |
| How to do an Internet-based Search |
A simple set of instructions that will enable you to start doing your own Internet-based searches for information. |
| NORD - The National Organization for Rare Disorders, Inc. |
NORD is a non-profit voluntary health organization dedicated to the prevention, control, and cure of rare "orphan diseases" and the welfare of people affected by these devastating illnesses. |
| MITO-DOC - MITOchondrial Disease Outreach Center |
The MITOchondrial Disease Outreach Center is a group of individuals in the Central Florida area that is working together to support research into, promote awareness of, and offer support to families affected by a Mitochondrial disease. My gratitude to MITO-DOC for their graciousness in asking permission to use the name of my former mitochondrial-related medical professionals listserv, the "MitoDoc-L". Much thanks. (The "MitoDoc-L" was permanently shut down in 1999.) |
| NORD - The National Organization for Rare Disorders, Inc.
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Disease Information on the MELAS Syndrome |
| Neuromuscular Disease Center, Washington University School of Medicine |
The Neuromuscular Group conducts clinical, research, and teaching activities. They treat over 1,300 outpatients with disorders of muscle and peripheral nerve in their weekly outpatient Neuromuscular Clinic. |
| The National Institute of Neurological Disorders and Stroke |
The NINDS conducts and supports research on mitochondrial myopathies. The goals of this research are to increase scientific understanding of mitochondrial myopathies and ultimately to find ways to prevent and cure these disorders. Great website for information. |
| Hidden Treasure |
Hidden Treasure is a Christian School that works exclusively with special needs students. They deal with all kinds of young people representing a wide range of learning disabilities and physical disabilities. This includes students diagnosed as slow learners; students with ADD, ADHD, autism, aphasia, down's syndrome, and other disabilities. (Karen's best friend, Kay, is a teacher here.) |
| Muscular Dystrophy Association of Australia |
This site has grown significantly over the past twelve months, to the point where extensive links, information and translations make "The Home of MDA" a one-stop-shop for general and specialized information on MD and related neuromuscular disorders. |
| MedSite |
Medsite categorizes, reviews and rates medical web sites. Their goal is to make medical information on the internet easily accessible to all users. They rate each and every site that is included in Medsite. They also review all the sites for usefulness for Doctors, Researchers, Health Professionals, Medical Students and the General Public. |
| The Mitochondrial and Metabolic Disease Center Biochemical Genetics and Metabolism UCSD Medical Center |
MMDC has formally evaluated over 250 children and adults with lactic acidemia and/or suspected mitochondrial disease over the past 2 1/2 years. They see about 100 children and adults a year, from all over the world with suspected mitochondrial disease. They have been able to obtain a diagnosis in about 2/3 of these patients, who have often failed all previous diagnostic efforts. In addition, MMDC is committed to the longterm management of all their patients. |
| Our-Kids: Support for Caregivers of Children with Disabilities |
Our-Kids is a support group for parents, caregivers and others who are working with children with physical and/or mental disabilities and delays. They call the list "Our-Kids" because, while it isn't exactingly descriptive, it avoids the pitfalls of labeling our kids anything but what they most certainly are: The wonderful little people in our lives. |
| Muscular Dystrophy Group |
The MD Group's main aim is to identify the causes of muscular dystrophy and allied conditions, to develop treatments which will alleviate their symptoms, and to discover cures. It makes grants to some 40 teams of medical researchers in research centers throughout Britain. (Click on the "Key Facts" button, and then on the "Fact sheets about Duchenne, Becker and many other conditions" link to find a VERY good source of information on Mito disorders and other MD's.) |
| Denise Ullman's "Common Health/Disability Acronyms" |
If you have ever wondered what all of those abbreviations are in some of your medically-related email, here's the place to go to find out what they mean. Denise has done an excellent job. |
| Rare Genetic Diseases In Children
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This website is devoted to rare genetic diseases in children. The website administrator is the father of a child with a very rare genetic disorder with no known treatment or cure. He wants to provide a good source for information, contact and consolation. |
| Human Molecular Genetics Communications Forum |
HUM-MOLGEN is one of the world's largest and best Internet sources for the latest information in human molecular genetics (4,000 mailing list subscribers and 40,000 WWW users). This independent service is professionally edited and their mailing list "TOPICS" feature ensures that you receive only the messages that interest you. |
| Physician's Guide for Mitochondrial Diseases |
Exceptional Parent Magazine guide |
| The Other DNA |
Article on research on mitochondrial diseases. |
| mtdna Mutations |
Article on mtdna mutations. |
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Link |
Mito disorders listed and explained. |
| Link #1 |
Cell respiration, OXPHOS, many good diagrams, flowcharts, photos. |
| Link #2 |
Cell respiration, OXPHOS, many good diagrams, flowcharts, photos. |
| Link #3 |
Cell respiration, OXPHOS, many good diagrams, flowcharts, photos. |
| Link |
Human Genetic Disease--A Layman's Approach |
| Hirsch Family |
Personal website. Explanations on the disease, personal experience with it. One child affected by a mitochondrial disorder. |
| Link |
Inborn Errors of metabolism: management : suspicion, evaluation, stabilization, treatment, etc.. |
| Link |
Diagram, explanation,citric acid cycle, respiratory chain. |
| Jackson Family |
Personal website. Former home of the MELAS Online Network (MON). Mito-related links and downloads related to mitochondrial and other rare disorders. (Also the home of this webpage.) |
| McElhinny Family |
Personal website dedicated to the disease. Wife and three children are all affected by mitochondrial disorders. |
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Link |
Current mitochondrial research. |
| Link |
Q&A in a medical lecture on electron transport. |
| Link #1 |
Medical School lecture on genetic disorders, including mito. This is what your new doctors are learning! |
| Watson Family |
Personal website. Wife and both children are all affected by mitochondrial disorders. |
| Link #2 |
Medical School lecture on genetic Disorders, including mito. This is what your new doctors are learning! |
| Link #3 |
Medical School lecture on genetic Disorders, including mito. This is what your new doctors are learning! |
| Link |
Mitochondria, hypothyroidism,and weight loss. |
| Link |
Very, very good diagram of the respiratory chain. |
| Mitochondrial Myopathies |
Mitochondrial myopathies. |
| Mitochondrial Disorders Webboard |
Massachusetts General Hospital mitochondrial disorders webforum. |
| Link |
Chapter 18 outline: Oxidative Phosphorylation |
| Electron Transport and Oxidative Phosphorylation |
Pharmaceutical Biochemistry II textbook pgs. 542-566 |
| Link |
Facts about metabolic diseases of the muscle. |
| OXPHOS Description |
1 page description of OXPHOS mechanics. |
| United Mitochondrial Disease Foundation (UMDF) |
Providing support and information to families and individuals affected by mitochondrial disorders. |
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UMDF: Southern California |
United Mitochondrial Disease Foundation: Southern California Support Group |
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UMDF: North Eastern United States |
United Mitochondrial Disease Foundation: North Eastern United States Support Group |
| International Mitochondrial Disease Network (IMDN) |
Providing support and information to families and individuals affected by mitochondrial disorders. |
| DCA/CLA Clinical Trial |
The purpose of this University of Florida Clinical Research Center study is to determine whether an investigational drug, Dichloroacetate (DCA), is beneficial to patients with Congenital Lactic Acidosis. |
| JAF Ministries |
"Joni and Friends", is the disability outreach of Joni Eareckson Tada. Joni, a quadriplegic as a result of a diving accident in 1967, is an internationally known advocate for the disabled, radio host, author, conference speaker and mouth-artist. JAF Ministries is a non-profit Christian organization. |
| Radio Bible Class Ministries |
Free Christian devotional and inspirational publications upon request. |
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