Site Delight
Just as the big bookstores
have a shelf of titles that staff recommend, we've assembled a
list of Web sites we find especially useful.
alslinks
www.alslinks.com
Set up by familial ALS patient Al Pickens, this site stands out
for its broad scope and ease of use. Pickens, whose brother and
father have ALS, calls his site "an Internet portal for persons
with ALS." We especially value its list of international
ALS organizations and survey of the neuromuscular disease clinics
and research centers in this country. The "What Is ALS?"
link is particularly good.
Coalition for the Advancement of Medical
Research (CAMR)
www.camradvocacy.org
CAMR is a coming together of academic medical researchers, patient
support groups, scientific societies and patients that’s
aimed at supporting stem cell research to cure/repair life-threatening
diseases. Click on to find more about stem cell research and how
it's faring in society. Should you want to become an advocate
for potential stem cell-based therapy, this is the site of choice.
ALS Digest
www.alslinks.com/alsdigestarchives.htm
Most every ALS patient who's not newly diagnosed knows about the
ALS Digest, patient Bob Broedel's e-newsletter that served some
6,000 subscribers until he stepped down as editor/writer last
spring. A mixed bag of ALS news releases, research abstracts,
patient and family letters, equipment for sale, book excerpts
and more, Broedel's publication was welcomed each week. For many
patients, the Digest has been a way to realize they're not alone
on the ALS path. All the issues from 1998 through this year are
catalogued on this site.
NIH Clinical Trials
www.clinicaltrials.gov/ct
ClinicalTrials.gov provides regularly updated information about
federally and privately supported clinical research— including
ALS—with human volunteers. ClinicalTrials.gov gives information
about a trial's purpose, who may participate, locations and contact
phone numbers.
Additional links
can be found at www.alscenter.org/web_sites/
Next > A
Friend Indeed
Down but Not Defeated
|
