The Jackson Family's Website
Mitochondrial-Related Links

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Some Mitochondrial and Other Disorder-related Listservs (Support Groups)
Description
MitoDragon
The MitoDragon is a listserv for families and individuals who are dealing with the challenges and heartaches of living with mitochondrial myopathies & related disorders.  Unlike some of the other mitochondrial disorder-related listservs, the MitoDragon is a "open" listserv, which means that users do not have to apply for approval to subscribe to the List.  Requests to subscribe will never be disapproved, and every reasonable effort will be made to maintain a subscriber's participation on MitoDragon.
Mitohelp
To share information and support for families with mitochondrial diseases.  Sponsored by MITO-DOC - MITOchondrial Diseases Outreach Center.
Mitolite
This is a casual, informal and friendly support list for people dealing with mitochondrial disease.  As an alternative to available lists that cover the medical, research and scientific information, this is "mito lite".  A place where we can talk informally about daily life, share jokes, stories, poetry, and just relax.  Come on in and take a break!
Our-Kids
Our-Kids is a "family" of parents, caregivers and others who are working with children with physical and/or mental disabilities and delays.  It's called "Our-Kids"to avoid the pitfalls of labeling our children anything but what they most certainly are: The wonderful little people in our lives.
Mito
For those affected by mitochondrial disease - a place to discuss, share and gain information and support.
Mitodoc
Membership restricted to medical, health, and scientific professionals.  (Not open to individuals with mitochondrial disorders or to their families and acquaintances.)  Disclaimer: This is not my former mitochondrial-related medical professionals listserv, the "MitoDoc-L", and is in no way related to myself or to the Jackson Family's Website.  My listserv, the "MitoDoc-L", was permanently shut down in 1999.
GammaGroup
A discussion group about, but not restricted to IVIg and other alternative treatments for mito, as well as other various and sundry things.
Barth List
Barth Syndrome Family Support Network.  This is a rare genetic mitochondrial disorder that only affects boys.
Meta-mito-autism
Intended for parents, clinicians & researchers interested in mitochondrial & metabolic issues present with autistic disorders.
Mitobelievers
This group is for those with mito disorders who also believe that their faith is important in healing.
Melas_Support
A Canadian-based group for individuals with mito diseases, especially MELAS.
MitoAngels
An online support group for parents who have lost a child to a mitochondrial cytopathy.
Mitoldies
For adults with a mitochondrial disorder who want to discuss the needs and issues that they and their caregivers must deal with on a daily basis.
[At the UMDF website: "Support">"Email Lists">"Online Support"]
Aussiemito
For Australian mitochondrial sufferers.

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Some Mitochondrial Chat Rooms
Description
MGH Neurology Chat Rooms Index
Go to this page, scroll down to the "Mitochondrial Disorders Chat Room", and click on it to enter the mito chat.  Usual meeting time is Sunday, 8 to 10 PM EST; but is open 24/7.  This chat area is provided as a free public service by the Department of Neurology at Massachusetts General Hospital, and is open to registered users only.  (Follow the simple instructions that you will find there to register.)
Mito Chat
For adults and children affected by mitochondrial diseases, their families, friends and caregivers.  To participate you must be subscribed to the "Mito" listserv (see above.)
[At the UMDF website: "Support">"Email Lists">"Online Support">"Mito Chat"]

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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.
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.
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
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.
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.
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.
UMDF: Southern California
United Mitochondrial Disease Foundation: Southern California Support Group
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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Medical Professionals & Facilities

The following two table list medical professionals and facilities working with families and individuals dealing with mito disorders.  To see more information on a particular medical professional or facility, click on the medical professional's or the facility's name in one of the tables below.

Medical Professionals Website Email Telephone #'s "Where In The World?"
Dr. Peter Berman No No 1-215-590-1000 Children's Hospital of Philadelphia; Philadelphia, Pennsylvania, USA
Dr. Neil Buist Yes Yes 1-503-494-2780 Oregon Health Sciences University; Portland, Oregon, USA
Dr. Doug Wallace Yes Yes 1-404-727-5624 Emory University Hospital; Atlanta, GA, USA
Dr. John Dossett No Yes 1-717-513-8790 The Milton S. Hershey Medical Center; Hersey, Pennsylvania, USA
Dr. Salvatore Di Mauro No Yes 1-212-305-1664 H. Houston Merritt Clinical Research Center for Muscular Dystrophy and Related Diseases; New York, New York, USA
Dr. Armand Miranda No No 1-212-854-1754 H. Houston Merritt Clinical Research Center for Muscular Dystrophy and Related Diseases; New York, New York, USA
Dr. Daryl DiVivo No No 1-212-305-5244 H. Houston Merritt Clinical Research Center for Muscular Dystrophy and Related Diseases; New York, New York, USA
Dr. Robert C. Vannucci No Yes 1-717-513-8790 The Milton S. Hershey Medical Center; Hersey, Pennsylvania, USA
Dr. Richard Haas Yes Yes 1-619-587-4004 University of California, San Diego, School of Medicine, Department of Neuroscience; San Diego, California, USA
Dr. Robert K. Naviaux, MD, PhD Yes Yes 1-619-543-2105 The Mitochondrial and Metabolic Disease Center Biochemical Genetics and Metabolism UCSD Medical Center; San Diego, California, USA
Dr. John M. Shoffner, MD No No 1-888-448-1495 Molecular Medicine Laboratory, Scottish Rite Children's Medical Center; Atlanta, Georgia, USA
Dr. Carlos T. Moraes Ph.D. Yes Yes 1-305-243-5858 Department of Neurology - University of Miami School of Medicine; Miami, Florida, USA
Dr. Thomas Klopstock Yes Yes 0049-89-70906-110 Department of Neurology - University of Munich; Munich, Germany
Prof. dr hab Maria Pachalska No Yes 011-48-12-425-28-33 Cracow Rehabilitation Center; Cracow, Poland
Leigh Ann Perkins, RN Yes Yes 1-352-392-2321 DCA/CLA Clinical Trial - University of Florida at Gainesville; Gainsville, Florida, USA
Dr. Peter W. Stacpoole, MD, PhD Yes Yes 1-352-392-2321 DCA/CLA Clinical Trial - University of Florida at Gainesville; Gainsville, Florida, USA
Steven J. Zullo, PhD Yes Yes 1-301-435-3576 Mitochondria Interest Group; Laboratory of Biochemical Genetics; NIMH-NIH; Bethesda, Maryland, USA

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Facilities Website Email Telephone #'s "Where In The World?"
Medical College of Georgia Yes No 1-706-721-0211 Augusta, Georgia, USA
Emory University School of Medicine Yes No 1-404-727-5624 Atlanta, Georgia, USA
Children's Hospital of Philadelphia Yes No 1-800-879-2467 Philadelphia, Pennsylvania, USA
Oregon Health Sciences University Yes No 1-503-494-8194 Portland, Oregon, USA
The Milton S. Hershey Medical Center Yes No 1-717-531-8790 Hershey, Pennsylvania, USA
H. Houston Merritt C.R.C. for M.D. and Related Disorders No No 1-212-854-1754 New York, New York, USA
University of California, San Diego, School of Medicine, Department of Neuroscience No No 1-619-534-5748 San Diego, California, USA
The Mitochondrial and Metabolic Disease Center Biochemical Genetics and Metabolism UCSD Medical Center Yes Yes 1-800-3LEIGHS San Diego, California, USA
The Michael & Charles Barnett Center for the Investigation and Treatment of Mitochondrial Disorders, St. Christopher's Hospital for Children Yes Yes 1-215-427-5484 Philadelphia, Pennsylvania, USA
Scottish Rite Children's Medical Center Yes Yes 1-404-256-5252 Atlanta, Georgia, USA
Department of Neurology - University of Miami School of Medicine Yes No 1-305-243-6691 Miami, Florida, USA
Department of Neurology - University of Munich Yes No 0049-89-70906-110 Munich, Germany

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Some of the links on this page were originally compiled by Dr. Katherine McElhinny Ph.D., <http://ddi.digital.net/~mcelhinn>

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