Amytrophic Lateral
Sclerosis (ALS), or Lou Gehrigs Disease, is a progressive neuromuscular disease that
is characterized by a degeneration of motor nerve cells in the brain and spinal
cord. ALS destroys a persons motor neurons, causing weakness, paralysis and,
eventually, death.
Most
muscles are affected, including legs, feet, and hands, and those that control swallowing,
talking and breathing. Most patients die of suffocation or other respiratory
failure.
ALS
does not affect a persons intellect, vision, hearing or sense of smell and
touch. People affected by this disease are completely aware of what is happening to
them at all times. Ninety percent of all ALS cases are random; only 5-10 percent are
genetically linked. Currently, there is no cure.
ALS is
always fatal. More than 5,500 people in the United States are diagnosed each year,
and as many as 30,000 Americans may have the disease at any given time. Yet, ALS is
classified by the National Institutes of Health as an orphan disease: one that
affects fewer than 200,000 people. An orphan disease does not get adopted" by the pharmaceutical industry
because it provides little financial incentive for the private sector to make and market
new medications to treat or prevent it. Many research facilities, such as the Robert
Packard Center for ALS Research (our primary beneficiary) receive no federal or state
funding and depend solely on philanthropy. That makes efforts like The Bruce Edwards
ALS Research Foundation even more critical.
For
more information on ALS and updates on current research, please go to www.alscenter.org.
(The
above information was provided by the Robert Packard Center for ALS Research at Johns
Hopkins University in Baltimore, Maryland.)

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