 Amyotrophic
lateral sclerosis (ALS) is a sudden-onset, incurable
neurodegenerative disease. Although it affects fewer people
than muscular dystrophy, multiple sclerosis or cystic fibrosis,
it kills more people than those three diseases combined. Since
it is neither well-known nor well-documented, it is almost
invariably fatal. Most people with ALS die within three to
five years from the onset of symptoms. The person’s quality
of life starts to deteriorate within months of diagnosis. Progressive
paralysis of all voluntary muscle tissue prevents the person
from walking, speaking, eating and, eventually, breathing.
Although ALS is both more devastating and more deadly than
many other neurodegenerative diseases, due to a lack of research
funding and existing knowledge, there is currently no specific
treatment for it.
The mission of the Fondation André-Delambre is threefold.
First, the foundation works with organizations involved in
the fight against ALS to teach people suffering from the disease,
as well as their families, about the few services offered by
the public sector and to help provide access to these services
as quickly as possible. Second, the foundation promotes research:
in order to ensure that its activities are both relevant and
effective, and that research funds are well-allocated, the
foundation has established a scientific committee for information
and advisory purposes. Third, the foundation has set up a lobby
group to interact with the media and public authorities when
reports are presented or treatments suggested.
Improving awareness of the disease is the most effective way
of encouraging governments to provide more services and more
funding for scientists who are looking for – and will
eventually find – a cure.
Scientific history has proven that, sooner or later, every
disease can be cured. It is simply a matter of time, money
and determination. |
