2003 World Record Set:
18 days, 4 hours, 51 minutes!

The Mississippi River Challenge for
Rett Syndrome & Leukodystrophy

- May 10, 2003 6 AM to May 28, 10:51 AM 2003-
A 2,348 Mile Marathon to Support a Marathon of Research!

Please see Justin Bradford's Website and sign his guestbook - he loves to hear from everyone (Justin is Bob Bradford's grandson)!


L to R: Bradford & Eid, near Lock & Dam 24


Lisette Guth, age 6.
Lisette has a diagnosis of Canavan Disease.

Cliff Johnson, 19 years old.
Clifford has a diagnosis of Undiagnosed Leukodystrophy.

Joshua Black
Joshua has a diagnosis of Metachromatic Leukodystrophy.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Leukodystrophy

What is Leukodystrophy?

Leukodystrophy refers to a group of genetic disorders that are characterized by the imperfect development or maintenance of the white matter (myelin sheath covering nerve fibers in the brain). The myelin sheath is an extremely complex fatty substance made of many components. Each of the leukodystrophies affects one of these components.

The most common signs seen in most leukodystrophies include gradual changes in an infant or child who previously appeared well. Changes may appear in body tone, movements, gait, speech, ability to eat, vision, hearing, behavior, memory, or thought processes. The symptoms, which vary according to the specific type of leukodystrophy, may be difficult to recognize in the early stages of the disease.

Is there any treatment?

Treatment for most of the leukodystrophies is symptomatic and supportive, and may include medications, physical, occupational and speech therapies, and nutritional, educational, and recreational programs. Bone marrow transplantation is showing promise for a few of the leukodystrophies.

What is the prognosis?

The prognosis for the leukodystrophies varies according to the specific type of leukodystrophy.

Inheritance

The pattern of inheritance in leukodystrophy is either autosomal recessive or X-linked. In autosomal recessive disorders, boys and girls are affected equally, and both parents must be carriers (heterozygotes). Carriers have no disability. When two carriers marry, on the average, one-half of their children will also be carriers, one-quarter will have the illness, and one-quarter will be entirely normal.

For X-linked (sex-linked) disorders only the mother is the carrier. If a woman is a carrier, then, on the average, one-half of her daughters will also be carriers, while the other half will be entirely normal. One-half of her sons will have the illness and the other half will be entirely normal.
For a sex-linked disorder, if an affected man has children, then all of his sons will be entirely normal, but all of his daughters will be carriers.

Specific Conditions

Adrenoleukodystrophy (ALD)/Adrenomyeloneuropathy (AMN)
Aicardi-Goutieres Syndrome
Alexanders Disease
CACH (Childhood Ataxia with Central Nervous System Hypomyelination or Vanishing White Matter Disease)
CADASIL (Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts & Leukoencephalopathy)
Canavan Disease (Spongy Degeneration)
Cerebrotendinous Xanthomatosis (CTX)
Krabbe Disease (Globoid Cell Leukodystrophy)
Metachromatic Leukodystrophy (MLD)
Neonatal Adrenoleukodystrophy
Ovarioleukodystrophy Syndrome
Pelizaeus-Merzbacher Disease (X-Linked Spastic Paraplegia)
Refsum Disease
Van der Knaap Syndrome (Vacuolating Leukodystrophy with Subcortical Cysts)
Zellweger Syndrome

 

I'd Like To Support
Leukodystophy Research!

All donations to research for Leukodsytrophy research for this charitable event are being directed to the United Leukodystrophy Foundation (ULF), a 501(c)3 non-profit group.

To make a charitable gift by check or money order to support Leukodystrophy Research via this fundraiser, please make payable to "United Leukodystrophy Foundation " and mail directly to the ULF directly at:

The Mississippi Challenge for Rett Syndrome and Leukodystrophy
c/o United Leukodystrophy Foundation
2304 Highland Drive
Sycamore, Illinois USA 60178

Phone: (800) 728-5483
FAX: (815) 895-2432

Donations made directly to the ULF are tax deductible to the full extent allowed by law. Please see your tax consultant for details.

 

Click here to find out more about the ULF and information on Leukodystrophies