Down syndrome site, care packages for the troops

By Carol Lindsay, RN
June 28, 2004

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.