NTSAD is dedicated to finding a cure for Tay-Sachs, Sandhoff, Canavan, GM1 and all the related diseases. Since we were founded over 63 years ago by a group of concerned parents, NTSAD has been at the forefront of advancing and supporting breakthrough research through the Research Initiative and collaborative programs.
An Introduction to Research
To understand research, it is essential to have a basic scientific understanding of the diseases, the research process, and the terminology. The following links provide this introduction.
Overview of the research process: Journey to a Cure
All about lysosomal storage disorders (Tay Sachs, GM-1, Sandhoff, Farber, Pompe and more)
All about leukodystrophies diseases (Canavan etc)
Tips for reading scientific literature
Resources to help evaluate the validity of a research study
Research by Disease
There are so many exciting efforts going into research it would be impossible to name them all here. The following pages serve as a summary of the recent research efforts. Most studies are in the Translational Research stage, but clinical trials are on the horizon.
Get Involved in Research
There are many ways to contribute research. Whenever we learn about a new and appropriate study that is recruiting patients, we update the list below. Participating in research is a personal decision, and not one which every family feels is right for them. If you are considering participating in a research study, you are welcome to call NTSAD to discuss the benefits and risks. Read here about the different natural history studies currently enrolling.
NTSAD and Research
How is my fundraising money used? How do you decide which studies are worth funding? What else do you do? Read NTSAD and Research for answers and more.
The best way to stay informed about research is to sign up to receive our monthly emails with research updates! Sign up on the contact us page.
Previous Research Update issues and recent news may be found in the Library and for news from around the Internet view News Feeds.