ntsad logo

Canadian Association for Tay-Sachs and Allied Diseases

The challenges facing a family with a child with one of the allied diseases are great. From first diagnosis through the progress of the disease and beyond we are faced with understanding what the disease is about, how to provide the best care possible, and how to cope through it all. Information and support are two of the things that help with these challenges.

On this section of our site we hope to present a selection of resources - books, web based resources and anything else we can find - that can help. 

Home Care:

Home care for a child with neurological disease - a document written by a parent in the NTSAD Ontario PPG that outlines some practical strategies for taking care of your child at home.
g-tube.com - a very detailed and helpful site on every aspect of tube-feeding.
Oley Foundation organization dedicated to support for patients on home-infused nutrition support therapy (e.g. G-tubes, NG tubes).
Undernutrition in children with a neurodevelopmental disability A position paper approved by the Canadian Pediatric Association. Includes a broad discussion on practical and ethical issues related to feeding and nutrition issues.

Genetics and Genetic Counselling:

Guide to Carrier Screening - NTSAD in the United States provides this list of centres that provide carrier screening for Tay-Sachs and other genetic diseases.
Background on how recessive genetic conditions and X-linked inheritance work - from NTSAD in the United States.
A Lay Person's Guide to Genetics - from The Rare Genetic Diseases in Children site.
Online Mendelian Inheritance in Man: a science oriented site on genetic diseases.
Ask NOAH about genetics : information on basic genetics and genetic counselling
Ask NOAH about Genetic Testing and Gene Therapy general information on genetic testing and gene therapy.
Proceedings of the Third International Bioethics Seminar on Intractable Neurological Disorders, Human Genome Research and Society. Held in Fukui, Japan 19-21 November, 1993. This is pretty academic stuff and can be pretty heavy going. There are some interesting pieces on legal, social and ethical issues of genetics.

News and Journals:

A resource that deserves special mention is Medline - a product of the United States National Library of Medicine. Medline is a seachable database of over 9 million Medical and Scientific Journal abstracts. Essentially you can input a keyword or keywords and ask Medline to search for journal abstracts related to those topics. The amazing thing is that this service is now free! You can get free Medline access through the National Library of Medicine's PubMed page. The abstracts searchable by Medline are of a very Medical/Scientific nature so it takes some (worthwhile!) effort for a lay person to wade through the material. Also you will just get abstracts (summaries of the articles) and if you find and article that is of interest you have to go to the journal publisher or a library to get it. Since the journals covered by Medline are not exactly "mass market" you'll have to go through either a University or Hospital library to track them down.

Research news the U.S. National Institute for Neurological Disorders and Stroke.


updated December 11, 2004