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 The
National
Down Syndrome Society is committed to enhancing
the quality of life and realizing the potential of everyone
with Down syndrome through education, research, and
advocacy. The website provides general information about
Down syndrome including cause, diagnosis, FAQs, genetics,
history, incidence, incidence of trisomy, life span,
myths and truths, and prenatal testing.
Information about advocacy and legislation that will
affect people with Down syndrome also is provided. Support
links include a message board for new parents and Club
NDSS, a website for people with Down syndrome and other
disabilities.
Government updates
A good place to keep abreast of possible changes in
health care legislation is at the U.S.
Government Printing Office website, which
works with federal agencies to disseminate information.
The Federal Register is the official daily publication
of rules, proposed rules, and notices of federal agencies
and organizations, as well as executive orders and other
presidential documents. Make a quick search by typing
in a topic. The topic “nursing” returned
40 hits, including information about a proposed rule
change that would require skilled nursing facilities
to keep a record of staff engaged in direct patient
care for each shift and for the public to have access
to those records.
Palliative care
The Initiative for Pediatric
Palliative Care is a project of the Center
for Applied Ethics and Professional Practice. Its goal
is to provide education and enhance family-centered
care for children living with life-threatening conditions.
The initiative provides an interdisciplinary curriculum
to address knowledge, attitudes, and skills that health
care professionals need to serve children and their
families. Curriculum materials and quality improvement
tools can be downloaded for free at the website.
Hearing impaired resource
The goal of Hard
of Hearing Advocates is to help people
with hearing impairments find solutions to allow them
to communicate. The website provides information about
the emotional issues relating to hearing loss, hearing
aid prices and consumer information, hearing aid sources,
digital hearing aids, assistive listening devices, and
a list of ototoxic drugs that may cause hearing loss.
Soldier support
If you want to send a care package to an American soldier
but have no idea how, AnySoldier.US
has the answer. Sgt. Brian Horn of Maryland started
the program when he agreed to distribute packages that
came to Iraq addressed “Attn: Any Soldier”
to soldiers who were not receiving mail. AnySoldier.US
began in August and has continued to grow. The website
lists supplies that soldiers need, such as prepackaged
food, T-shirts, and Beanie Babies. The Beanie Babies
are easy to carry in soldiers’ pockets and they
give them to local children. Needs vary by the platoon
and location of soldiers. The site provides specific
information on how and where to send packages.
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