Huntington's Disease Information
Announcements | Documents Maintained at This Site | Links to Outside Resources
From July 1997 to July 1999, this web site was not maintained because my husband Paul had a malignant brain tumor. He died on April 11, 1999. During his illness I sent email messages to the family telling about options for treatment, symptoms he was having, etc. I have put those messages together into the "Diary of a Brain Tumor Patient's Wife" and put it on my web site at: http://www.lib.uchicago.edu/~rd13/bt/diary.html.
I have now started working on this site again in a limited fashion, but it no longer includes the most current information on Huntington's Disease. For more current information, see the Huntington's Disease Advocacy Center at http://www.hdac.org/ or HD Links at http://get-me.to/hdlinks. For the latest issue of Hopes & Dreams, newsletter of the Illinois Chapter of the Huntington's Disease Society of America, see http://www.hdsa-il.org/id2.html.
The Huntington's Disease Information web site has grown so much since it began in 1996 that documents have been grouped together on subpages. This alphabetical list provides an easy way to locate specific documents.
Lists of articles, audio-visual materials, books, electronic resources, pamphlets, plays, and theses from 1990 to 1999 relating to Huntington's Disease.
Several articles discussing the pros and cons of genetic testing for Huntington's Disease.
Includes articles from the newsletter Hopes & Dreams, instructions for ordering memorial envelopes and memorial or tribute cards, and form for sharing information on nursing homes.
List of lists for resources on the World Wide Web that would be helpful for Huntington's Disease families, including some which already exist and some which are being developed.
Instructions for subscribing to the electronic discussion group for Huntington's Disease.
Articles on Huntington's Disease from the Boston Globe, the Park Forest Star (Park Forest, Illinois), and The Sun (Bremerton, Washington).
List of nursing homes provided by family and friends of persons with Huntington's Disease.
Various resources relating to nutrition for Huntington's Disease. Includes cookbooks, recipes, ideas from caregivers, information on feeding tubes, and Internet resources.
Poems and stories about Huntington's Disease or written by caregivers or people with Huntington's Disease.
Reports on presentations by Dr. Kathleen Shannon at the 1996 and 1997 meetings of the Illinois Chapter, Huntington's Disease Society of America, a report by Mary Price of the 1996 Annual Convention of the Huntington's Disease Society of America, and a report by Andrew Maloney, 1st year Biology student at the University of Chicago, June 2002.
List of articles, books, catalogs, etc. relating to communication, food, wheel chairs, and other aspects of daily life for people with Huntington's Disease.
Reviews and summaries of books, etc. relating to Huntington's Disease.
Ideas on communication, etc. by individuals who have known or cared for someone with Huntington's Disease.
This document has been replaced by Electronic Resources on Huntington's Disease, 1990-1999
Created and maintained by Renette Davis. Send comments to: rd13 at uchicago.edu
Created: April 19, 1996
Last updated: Dec. 18, 2007