Brain Bank - Information on donating your MLD family member's brain for further MLD research.
Clinical Descriptions of MLD
- eMedicine An excellent, easy to read MLD overview covering the clinical, diagnosis, treatment, progression, medication (none) & follow-up care for MLD family members. June'2002
- MEDLINEplus - Overview of MLD -
- National Inst Health, National Library of Medicine
- very detailed, thorough and technical
- easy to read - links to definitions of many technical terms
- Comprehensive & Detailed MLD Summary (~1995)
- Baylor College - Patient 37 with a good description of MLD
Other non-MLD Clinical Descriptions of Interest
Frequently Requested Medical Contacts (listed alphabetically)
These are not the only medical resources for MLD nor are they necessarily "all knowing" or able to accept every patient that asks for their help or consultation. You need to have a local care team in place for your family member - one that works with you , and responds to your requests and concerns. Many have found that their Neurologist is the key care team member.
- Dr. Larry Charnas - University of Minnesota - clinical neuroscience
Dr. Florian Eichler - Massachusetts General Hospital/Harvard, Boston, MA
Dr. Edwin H. Kolodny - Chairman, Department of Neurology (Genetics), University of New York
- Dr. Joanne Kurtzberg - Duke University, North Carolina - Pediatric Bone Marrow and Stem Cell Transplant Program
Dr. Paul Orchard - University of Minnesota - Inherited Metabolic and Storage Disease Bone Marrow Transplantation Program
Dr. Charles Peters - Children's Mercy Hospital, Kansas City, MO
Dr. Michel Philippart - Orthopedic Hospital, Los Angeles, CA
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- Dr. David A. Wenger - Lysosomal Diseases Testing Laboratory, Jefferson Medical College, Pennsylvania. See lab info here.
Also see MLD testing information here
Medical Centers
- Fairview-University Blood and Marrow Transplant (BMT) Program - University of Minnesota
- Bone Marrow and Stem Cell Transplant Program - Duke University, North Carolina
- Hematopoietic Stem Cell Transplant Therapy - Children's Mercy Hospital, Kansas City, MO
- Google Search - no experience or endorsements implied.
Medical Definitions & Additional Information
- Online Mendelian Inheritance in Man - very comprehensive and technical from the National Center for Biotechnology Information
- MEDLINEplus - National Inst Health, National Library of Medicine
- National Organization for Rare Disorders (NORD)
- Human Gene Mutation database - very technical
- Pediatrics Journal - search for Metachromatic Leukodystrophy
- National Institute of Health - Office of Rare Disease clinical trial listing - search for Metachromatic Leukodystrophy
- Centerwatch clinical research overview and and clinical trials database - search for Metachromatic Leukodystrophy
- National Institute of Neurological Disorders and Stroke
- Bethany's Hope - Canadian Foundation supporting gene therapy based MLD research - sponsoring a lab in London, Ontario, Canada
- The Myelin Project - focused on accelerating the research on repair of the myelin damaged by the genetic diseases such as the leukodystrophies, and by acquired diseases such as multiple sclerosis.
San Raffaele-Telethon Institute of Gene Therapy of Genetic Diseases (Italy) - gene therapy research
- Understanding Stem Cell and Bone Marrow Transplants - an online overview of these procedures - CancerBACUP, a UK cancer information service
- The Manosidosis Society - a series of links about Bone Marrow Transplants
- Journal of a BMT Patient - while this BMT was not for MLD, this will give you an idea of the process of a BMT
Note that these individual articles were quickly posted from scans and the images are large, 200k each, and may load slowly on your computer)
Also See: