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Researchers are making steady progress in pinpointing genes that can cause or predispose people to develop a number of neurological disorders. Over the past few years, scientists have both discovered new genes and increased our understanding of how these genes cause disease. These advances have led to better diagnostic tests and in some cases to the possibility of earlier interventions. Hopefully, they will also lead to new treatments; until they do, the decision to get tested or not will be complicated. Even when treatments become available, these decisions are best made in consultation with your doctor and a counselor.
Hereditary Disease Foundation hdfoundation.org/home.php 212-928-2121
The HDF offers resources and testing information for families, as well as grants, fellowships, and a workshop program to foster dialogue among researchers.
Genetic Alliance geneticalliance.org 202-966-5557
This international coalition comprised of more than 600 advocacy, research, and health care organizations, represents millions of individuals with genetic conditions and their interests.
Genetic and Rare Diseases Information Center genome.gov/10000409 301-402-0911
The Center provides immediate, virtually round-the-clock access to experienced information specialists who can furnish current and accurate information—in both English and Spanish—about genetic and rare diseases.
Genetics Home Reference ghr.nlm.nih.gov/
A Guide to Understanding Genetic Conditions from the National Institutes of Health.
Online Genetic Support Group Directory mostgene.org
Alphabetic index of genetic disorders with links to associations, support groups, and disease-related resources.
Huntington's Disease Society of America hdsa.org
The HDSA provides support, information, and educational services to improve the lives of those affected by Huntington's disease, and offers resources and guidance for families affected by Huntington's.
American Academy of Neurology Foundation
The Brain Matters
AAN patient website
Alzheimer's Foundation of America
Autism Society of America
National Headache Foundation
Multiple Sclerosis Foundation
1-800-225-6495 National Multiple Sclerosis Society
Muscular Dystrophy Association
American Pain Foundation
National Parkinson Foundation
Parkinson's Disease Foundation
American Stroke Association
National Stroke Association
Brain Injury Association of America
If you'd like to find a trained pet therapist or find out if your pet might be a good therapy dog, contact the Delta Society at deltasociety.org or 425-679-5500. The Delta Society's Pet Partners Program trains volunteers and their pets for visiting-animal programs in hospitals, nursing homes, rehabilitation centers, schools, and other facilities. Over 8,800 Pet Partners teams now operate in all 50 states and four other countries.
A Dogamentary Directed By Gayle Kirschenbaum
A Dog's Life is a poignant documentary about the bond between dogs and humans as told through the story of Emmywinning TV producer Gayle Kirschenbaum and her dog Chelsea. By turns funny and sad, the film explores Chelsea's role in her owner's life and how it expanded when Chelsea was certified as a therapy dog after the horror of 9/11.
Go to dogamentary.com to purchase a DVD of A Dog's Life: A Dogamentary or to arrange for a screening of the film. Portions of the proceeds go to the Delta Society.
Peripheral neuropathy is the medical term for damage to the nerves that run from the brain and spinal cord to the rest of the body. At one time, people with neuropathy were told not to exercise. But many doctors now recommend low-impact aerobic, resistance, and flexibility exercises instead of inactivity. For more information on peripheral neuropathy and how to exercise safely if you have nerve pain, contact the following:
By Charlotte Hayes, M.M.Sc., M.S., R.D., C.D.E. (American Diabetes Association, 2006)
This easy-to-use guide on low-impact exercise demonstrates how people with diabetes can keep fit with just 30 minutes of exercise per day by making the most of the activities you already do. Hayes is a nutrition and fitness expert who has specialized in diabetes management and education for 17 years.