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What is MDA? MDA is a voluntary health
agency - a dedicated partnership between scientists and concerned
citizens aimed at conquering neuromuscular diseases that affect
more than a million Americans. The MDA receives NO government
grants or United Way funding, nor does it seek or receive fees
from Patients or their families. All monies raised in Wyoming
are used to help Wyoming clients. Seventy-eight to eighty-two
percent of all funds raised goes directly toward patient services
such as: clinic Visits, support groups, summer camps, purchase
of orthopedic equipment and wheelchairs, and on-going research
to find a cure.
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| Founded: |
1950; in New York
City by a small group of parents. |
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| Purpose: |
To combat neuromuscular disease
through (1) basic and applied scientific investigation, (2) comprehensive
programs of a patient services and clinical care, and (3) widespread
professional and public health education. |
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| MUSCULAR
DYSTROPHY AFFECTS |
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| Nationally: |
There are 250,000 people affected
with one of the nine forms of muscular dystrophy and 1 million
people affected by 1 of the 43 diseases covered under MDA's program. |
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| Wyoming: |
Over 200 adults and children. |
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| NEUROMUSCULAR
DISEASES COVERED UNDER MDA'S PROGRAM |
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| What: |
A group of approximately 43 inherited,
non-contagious diseases marked by progressive weakness and degeneration
of the skeletal or voluntary muscles. These muscles control movement. |
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| When: |
Early infancy/childhood, middle
age or later. |
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| Why: |
A defect in a gene, the body's
basic unit in determining inherited characteristics and the instructor
for telling the cells how to make a protein or other nerve-affecting
substances. |
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| Who: |
Anyone.A defective gene may be
transmitted from parent to child, or may occur spontaneously. |
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| CLINIC
LOCATIONS |
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| Southern Wyoming |
The Children's Hospital, Denver,CO;
University Hospital, Denver,CO |
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| Northern Wyoming |
Deaconess Medical Center, Billings,
MT; Benefits Healthcare, Great Falls, MT |
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| MDA
SERVICES |
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| Free: |
Clinic visits, specific diagnostic
tests, support groups, summer camp, and information on these diseases. |
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| Summer Camp: |
2 one-week sessions each June
for children aged 6-21. Free to the family; $525 per child cost
to MDA |
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| Medical Equipment: |
Assistance for the purchase of
wheelchairs and leg braces.Bath equipment, raised toilet seats,
walkers, canes, hospital beds, communication devices; and more
are available on loan as perscribed by a physician. |
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| Therapy: |
Physical, occupational, and respiratory. |
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| HIGHLIGHTED
DISEASES |
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| Duchenne
(doo-shen) and Becker: |
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| Affects
1 in every 100,000 births nationally. Caused by a defect in the
gene for protein production. Affects mostly male children. This
is the most common and severe form of muscular dystrophy in children.
Onset can occur at 2-6 years of age. |
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| Symptoms: |
Weakness in muscles in pelvis, upper arms and upper legs, with
joint stiffening, spinal curvature, heart problems and respiratory
impairment. Progresses slowly with rapid spurts. Early signs
are tendency to fall, difficulty rising from sitting or lying
position and waddling gait. Visible sign is enlargement of the
calf muscle due to accumulation of fat and connective tissue.
Wheelchair is usually needed by age 12.
Breathing is affected during later stages leading to respiratory
impairment and infections. Death usually occurs in the 20's.
MDA-sponsored research has recently shown that gene therapy
can prevent muscle destruction and preserve muscle function
in children with Duchenne muscular dystrophy by the insertion
of a gene (through a viral vector) for dystrophin, muscle protein.
An effective treatment is forthcoming in the near future.
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| Amyotrophic
Lateral Sclerosis (ALS or Lou Gehrig's Disease): |
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| Pronunciation:
a-my-o-trofic lateral sklerosis. Affects 20,000 adults nationally.
The cause is still unknown. |
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| Symptoms: |
Nerve cells that control movement die causing wasting and weakness
of all body muscles, with cramps and muscle twitches common.
ALS first affects legs, arms and/or throat muscles, and generally
progresses rapidly. Complete paralysis results with death occuring
in 2 to 5 years. Three to five percent of all cases are genetic.
The latest research may link ALS to a gene defect causing the
cells protein to have an abnormal structure, making it less
effective at detoxifying free radicals (toxic substances). Left
uncontrolled the end result is destruction of nerve cells.
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| Myotonic
Dystrophy: |
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| The most
common form of adult-occuring muscular dystrophy. |
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| Symptoms: |
Generalized weakness and muscle
wasting. Affecting the face, feet, hands, and neck first. Delayed
relaxation of muscles after contraction. Progression is slow,
sometimes spanning 50 to 60 years. |
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For more information on MDA please contact:
Muscular Dystrophy Association
951 Werner Court, Suite 385
Casper, WY 82601
(307) 472-0755
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