1990-2003
Retrieved from the Internet
September 2003
The purpose of this bibliography
is to help consumers and professionals identify titles
and web sites that have information
on Huntington’s Disease. Some books and articles have
also been included in this list, but are not owned by LINC,
and, not all of the materials have been reviewed by staff.
Materials have been included based on publication date and
perceived relevancy, and includes those publications from
1990-2003.
Books:
Archer, Elton.
(1995). Red the rose, sharp the thorn. Longview, TX: Hudson
Printing & Graphic Design.
Chiu, Edmond. 1991). Caring
for persons with Huntington’s
Disease: a handbook for health care professionals. New York:
Huntington’s Disease Society of America.
Clipper, Stephanie E. (1998). Huntington’s
disease: hope through research. Bethesda, MD: The Institutes.
Harper, Pete S. (1996). Huntington’s
Disease. Philadelphia: W.B. Saunders.
Leal-Pock, Carmen. (1998). Faces
of Huntington’s. Bellville, Ont.: Essence Pub.
Living with Juvenile
Huntington’s Disease. (n.d.).
New York : Huntington’s Disease Society of America.
Pollard, Jim. (2000). A
caregiver’s handbook for advanced-stage
Huntington’s Disease.
New York : Huntington’s Disease Society of America.
Quarrell, Oliver. (1999). Huntington’s
disease : the facts. Oliver Quarrell. London : Oxford University
Press.
Nuance, Martha. (2002). The
Juvenile HD handbook : a guide for physicians, neurologists
and
other professionals / Martha
Nance. New York : Huntington’s Disease Society of America.
Paulsen, Jane S. (2000). Understanding
behavior in Huntington’s
Disease : a practical guide for individuals, families and
professionals coping with HD. New York : Huntington’s
Disease Society of America.
Ranen, Neal G., Peyser, Carol E., Folstein, Susan E. (1996).
Una guia medica para el manejo de la enfermedad
de Huntington: intervenciones farmocologicas y no farmocologicas. Cambridge,
Ont.: International Huntington Association.
Understanding Huntington’s
disease: a resource for families. (1994). Cambridge, Ont.:
Huntington Society of
Canada.
Werbel, Eileen. (1990). Toward
a fuller life: a guide to everyday living with Huntington’s Disease. New York:
Huntington’s Disease Society of America.
Wexler, Alice. (1995). Mapping
fate: a memoir of family, risk, and genetic research. New
York: Times Books.
Videos:
Chiu. Edmond. (1990). Nanny’s Birthday. New York :
Huntington’s Disease Society of America.
Claudia’s Challenge. (n.d.). New York : Huntington’s
Disease Society of America.
Communication strategies
for people with Huntington’s
disease. (1993). Cambridge, Ont: Huntington Society of Canada.
Etten, Larry B., Paulsen, Jane S. (1990). Huntington disease:
living with knowledge.
Sioux Falls, SD: The Chapter.
Gift of caring: a practical
guide to managing feeding & swallowing
difficulties associated with Huntington’s disease.
(1991). Cambridge, Ont.: Huntington Society of Canada: Promptvision
Productions.
O’Brien, Christopher. (1998).
HD management forum: care, medications, treatment. New
York: The Society.
Journal Articles:
Cattaneo, Elena. (2002). The enigma
of Huntington’s
disease. Scientific American, 287(6), 92-97.
DiFliglia, Marian. (2000). Genetics of childhood disorders:
X. Huntington disease. Journal of the
American Academy of Child and Adolescent Psychiatry, 39(1), 120-122.
Goolkasian, Virginia. (2001). Delving
into Huntington’s
disease. USA Today, 130(2676), 34-35.
Holmes, Bob. 2003). Switching off
Huntington’s. New
Scientist, 177(Mar. 15.), 20.
Nowak, Rachel. (2003). Diseased brains attempt to repair
themselves. New Scientist, 177(Feb. 8), 23.
Seppa, N. (2003). Huntington’s
advance. Science News, 163(7), 102.
Smolowe, Jill. (1997). Seeing the
future. Neuropsychologist J. Brandt tracks social consequences
of Huntington’s
disease screening. Time, 150(Fall), 38-39.
Travis, John. (2000). Antibiotic
for Huntington’s
disease? Science News, 158(8),
120.
Articles on the Web:
Overview
Huntington's Disease F.A.Q.(2000-2005)
Huntington Disease Advocacy Center. Retrieved May 31, 2005
from http://www.hdac.org/hdfaq/faq.php
Huntington’s Disease.
(2002). National Organization for Rare Disorders NORD. Retrieved
March 16, 2004 from http://www.rarediseases.org/search/rdbdetail_
abstract.html?disname=Huntington%27s%20Disease
Huntington’s Disease, HD. (1996-2004). OMIM: Online Mendelian Inheritance in Man.
Retrieved March 16, 2004 from
http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=143100
Huntington’s Disease:
hope through research. (2001). National Institute of
Neurological Disorders and Stroke Retrieved March 16, 2004
from
http://www.ninds.nih.gov/disorders/huntington/detail_huntington.htm
Juvenile HD (2002). HOPES. Retrieved March 16, 2004 from
http://www.stanford.edu/group/hopes/basics/juvenile/e0.html
Juvenile Huntington’s Disease
(2004). WeMove: Worldwide Education and Awareness for Movement
Disorders. Retrieved
March 16, 2004 from http://www.wemove.org/hd_sym_jhd.html
Treatment
Potential treatments
for Huntington’s
Disease. (2003). HOPES. Retrieved March 16, 2004 from http://www.stanford.edu/group/hopes/treatmts/index/trhome.html
Scientists identify
potential new treatment for Huntington’s
Disease. (2002). National Institute of Neurological Disorders
and Stroke. Retrieved March 16, 2004 from http://www.ninds.nih.gov/news_and_events/
news_article_huntington_cystamine.htm
Family Guide Series (n.d.). Huntington’s
Disease Society of America. Retrieved March 16, 2004 from
http://www.hdsa.org/site/PageServer?pagename=family_guidehomet
Trial drugs for Huntington’s
Disease inconclusive in slowing disease. (2001). National
Institute of Neurological
Disorders and Stroke. Retrieved March 16, 2004 from http://www.ninds.nih.gov/news_and_events/pressrelease_
huntingtons_drugs_081301.htm
What treatments are
recommended for Juvenile HD? (2002).
HOPES. Retrieved March 16, 2004 from http://www.stanford.edu/group/hopes/basics/juvenile/e9.html
Care
Klasner, Estelle. (n.d.). Fact sheet
6. Huntington’s
Disease Association. Retrieved March 16, 2004 from http://members.aol.com/hdanwlancs/Fsheet6.html
Klasner, Estelle. (n.d.). Fact sheet
9: communication skills. Huntington’s Disease Association.
Retrieved March 16, 2004 from http://members.aol.com/hdanwlancs/Fsheet9.html
Organizations:
Hereditary Disease
Foundation. http://www.hdfoundation.org/
Huntington’s Disease Society
of America. http://www.hdsa.org/
1-800-345-HDSA. Includes information on conference in August
2003.
Huntington Society of Canada. http://www.hsc-ca.org/english/index.htm
Web Sites:
Ask NOAH about Huntington’s Disease.
NOAH: New York Online Access to Health.
Retrieved March 16, 2004 from http://www.noah-health.org/en/bns/disorders/huntington/index.html
Caring for People with Huntington’s
Disease.
http://www.kumc.edu/hospital/huntingtons/index.html
Resources for Daily Living with Huntington’s
Disease. http://www.lib.uchicago.edu/~rd13/hd/daily.html
Chat Groups:
Huntington's Disease Chat Rooms http://hdlighthouse.org/commlinks/families/updates/0056forum-chat.php
On-line Discussion Groups - http://huntingtondisease.tripod.com/internetsupportgroups/l
