RFD: sci.med.diseases.als

Jan Rodman alssoc at inforamp.net
Fri Dec 15 01:20:01 EST 1995


                     REQUEST FOR DISCUSSION (RFD)
                unmoderated group sci.med.diseases.als

Follow-ups are directed to:  news.groups

This is a formal Request for Discussion (RFD) on the creation of a
new world-wide unmoderated Usenet newsgroup, sci.med.diseases.als.

Newsgroups line:
sci.med.diseases.als	Amyotrophic Lateral Sclerosis research and care.

RATIONALE: sci.med.diseases.als

There is currently no usenet discussion group for the many persons
interested in studying or affected by amyotrophic lateral sclerosis,
more commonly known as ALS.  In North America, it is also called Lou
Gehrig's Disease.  In South America, Europe, Australia and Asia, ALS
is included in the group of neuromuscular diseases commonly known as
MND (Motor Neurone Disease).

Amyotrophic lateral sclerosis is a rapidly progressive, neuromuscular
disease.  It attacks the motor neurons responsible for transmitting
electrical impulses from the brain to the voluntary muscles throughout
the body.  When these muscles fail to receive messages, they
eventually lose strength, atrophy and die.  There is no known
treatment or cure.  Except in some rare instances when an apparent
prolonged remission seems to have occurred, ALS is at present
generally accepted as a fatal disease.

ALS cannot be *caught* -- it is not contagious.  In 90% of ALS cases,
it strikes people with no family history of the disease.  10% are
classified as familial or inherited ALS.  It may occur at any age,
with the likelihood increasing as people grow older.  ALS occurs
equally in men and women.

Because the disease frequently takes its toll before being positively
diagnosed, many patients are debilitated before learning they have
contracted ALS.  The disease does not affect the senses -- taste,
touch, sight, smell and hearing -- or the mind. .  Education of
healthcare professionals as to the nature of the disease is a
priority.

ALS wreaks a devastating effect on patients as well as their families.
As they struggle to cope with the prospect of advancing disability and
death, it consumes their financial and emotional reserves.  It is a
costly disease in its later stages, demanding both extensive nursing
care and expensive equipment.  The target population therefore
includes not only researchers, but also people with ALS, their
families, caregivers and healthcare providers.

This proposed newsgroup would enable researchers and doctors from all
over the medical and scientific community who are studying this
disease to communicate via the ALS newsgroup, and could be invaluable
help in the development of new concepts and ideas and in the
dissemination of useful information to all persons concerned with ALS.
The newsgroup would also give patients a forum to discuss the disease,
and offer support.

CHARTER: sci.med.diseases.als

The proposed newsgroup, sci.med.diseases.als is intended for
discussion about the many different aspects of ALS, its symptoms,
latest treatment options, research concepts and ideas, as well as how
ALS is experienced by patients, their caregivers, friends and family
members, doctors and other medical professionals, or anyone affected
by or involved with ALS.

Anyone with an interest in ALS is free to post, in addition to the
medical and scientific community.  This newsgroup is interested both
in providing an open forum for the exchange of medical and scientific
information, which can be useful to all participants, and in fostering
communication between people affected by ALS from all parts of the
globe.  Above all, we wish to encourage a supportive and open
atmosphere for the free exchange of opinions and information.

The following are examples of possible posting topics:

 + ALS research concepts, ideas and findings
 + new information and resources available about the disease
 + questions regarding any aspect of ALS
 + symptoms and problems arising from the onset of new symptoms
 + treatments and therapies, both conventional and alternative
 + problems in the medical community in regard to ALS
 + emotions, including fears and anxieties caused by this illness
 + social issues regarding this illness
 + related practical problems or solutions

Commercial advertisements may NOT be posted to this proposed group.

END CHARTER.

DISTRIBUTION

This RFD has been cross posted to:
     bionet.neuroscience, bionet.announce,
     bionet.prof-society.cfbs
     sci.med, sci.research

And EMailed to:
     bro at huey.met.fsu.edu for posting to ALS.Digest
-- 
Jan Rodman, National Executive Director, ALS Society of Canada
"We're fighting Lou Gehrig's Disease with everything you give!"
phone:  416-362-0269 or toll-free 1-800-267-4ALS (4257)
fax:  416-362-0414      e-mail:  alssoc@ inforamp.net



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