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18 days, 4 hours, 51 minutes!
Mississippi River Challenge for
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Johnson, 19 years old.
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.
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.
there any 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.
is the prognosis?
prognosis for the leukodystrophies varies according to the specific
type of leukodystrophy.
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.
Like To Support
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:
Mississippi Challenge for Rett Syndrome and Leukodystrophy
Donations made directly to the ULF are tax deductible to the full extent allowed by law. Please see your tax consultant for details.