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Huntington's Disease Center at Johns Hopkins

Support Group | Web Links | Publications

SUPPORT GROUP

Johns Hopkins Huntington's Disease Support Group
For those concerned about all aspects of Huntington’s disease: individuals, family, friends

Meets at 7PM
2nd Tuesday of the month at College Manor AL
300 W. Seminary Ave.
Lutherville-Timonium, MD 21093

410-252-0440 (for changes due to inclement weather only)
Enter the building through the infirmary entrance at the back of the building.
Call Kit McFarlane, facilitator, for directions and questions: 410-955-2497

USEFUL WEB LINKS

We have provided these web sites as a resource for you. We cannot verify the accuracy of all of the information they contain. Should you have questions regarding information on these sites, please contact your physician.

Huntington's Disease Society of America
http://www.hdsa.org

Clinical Trial Website for the National Institutes of Health
http://clinicaltrials.gov      

Hereditary Disease Foundation
http://www.hdfoundation.org

HOPES: Huntington's Outreach Project for Education at Stanford
http://www.stanford.edu/group/hopes

National Institute of Neurological Disorders and Stroke
http://www.ninds.nih.gov

PUBLICATIONS

Treatment

A Physician's Guide to the Management of Huntington's Disease,  2nd Edition
by Adam Rosenblatt, M.D, Neal G. Ranen, M.D., Martha A. Nance, M.D., Jane S. Paulsen, Ph.D

Huntington's Disease Society of America
505 Eighth Street, Suite 902
New York, NY 10018
1-800-345-HDSA

Food & Nutrition

Pass the Calories, Please! by F. Gail
Ordering Information: American Dietetic Association
216 W. Jackson Blvd., Suite 800
Chicago, IL 60606-6995
(312) 899-0040. ISBN: 0-88091-134-6

This cookbook is designed as a practical guide for people who need suggestions on ways to increase calories in their diets. Practical tips are given on how to handle conditions that prevent one from eating well, such as nausea, vomiting, diarrhea, sore or dry mouth, or a general loss of appetite. The recipes included are rich in the nutrients that may be needed at such times, including vitamins, protein, and fiber. The book also discusses eating out, commercial supplements, and food safety.

The Non-Chew Cookbook by J. Randi Wilson
Ordering Information: Wilson Publishing Inc.
P.O. Box 2190
Glenwood Springs, CO 81602-2190
(800) 843-2409
$23.95

Genetics

Genetic "Russian Roulette" by Nancy S. Wexler
Hereditary Disease Foundation

Mapping Fate by Alice S. Wexler
Tells the story of a family at risk for HD and the search of the gene that causes the disorder.

General Huntington's Disease

Hope Through Research by Sarah Lieber

Saint Vitus' Dance by Jill Rubalcaba

Handbook for Mortals: Guidance for People Facing Serious Illness
by Joanne Lynn, M.D., Joan Harrold, M.D
w/ forward by Rosalynn Carter

Legal, Financial and Health Care Decisions

Tomorrow's Choices: Preparing Now for Future
American Association of Retired Persons (AARP). A free publication
Ordering Information: 601 E. Street, NW
Washington, DC 20049
Publication Number: #D13479

Personal Stories

Woody Guthrie, A Life by Joe Klein

Faces of Huntington's by Carmen Leal-Pock

Portraits of Huntington's by Carmen Leal-Pock

Fiction

Frameshift by Robert Sawyer