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We’d love to hear your feedback, suggestions and other ideas about this series. Fill out this form and we’ll take it all into consideration! There is always room to improve and we want to be sure we’re offering all we can.
The goal of this series is to document and capture information that relates to the family experience in all its forms (caring for a child, grief, living with the adult onset forms) and the symptom and care management involved. These videos allow families, supporters, and healthcare professionals worldwide to have access to information that may not be readily available to them in their area. This series aims to help relieve the isolation brought on by these rare diseases.
This video is a comprehensive review of an intervention that can help your child or loved one when swallowing food becomes too difficult. It is a family choice and there is no right or wrong answer when it comes to making a decision for your child. Patricia Beaudry, RN explains G-Tubes: A to Z with Isaac in this video, and we thank her for her time.
These videos show the different ways you can work with your child to keep their muscles relaxed, loose, and not contracted depending on their age. It can also be a wonderful way to connect with your child through movement and touch. It may be helpful to share this with your care team of therapists for them to perhaps learn something new while working with your child.
Our thanks to Haley Snyder, PT, Mollie & Lorelei Sandoval, and Isaac for giving their time to share their knowledge.
This video is a brief description of a form of respiratory therapy that simulates manual percussive therapy to loosen up secretions in the lungs. It is known as The Vest, Airway Clearance Vest, High Frequency Chest Wall Oscillation, and SmartWay Airway Clearance System, and other names depending on the manufacturer. Our thanks to Lorelei Sandoval and Eli for demonstrating how this particular piece of equipment can be so helpful as well as a preventative therapy.
National Tay-Sachs & Allied Diseases Association (NTSAD) leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. Supporting families is the center of everything we do.
The content of this website is intended for informational purposes only and not intended to be a substitute for professional medical advice, diagnosis, or treatment.
The National Tay-Sachs & Allied Diseases Association (NTSAD) leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. Supporting families is the center of everything we do.
Get the latest news from NTSAD about our Community, the research that provides hope, and what is happening in the world of rare disease.
2001 Beacon Street, Suite 204
Boston, MA 02135
(617) 277-4463 firstname.lastname@example.org
National Tay-Sachs & Allied Diseases Association
2001 Beacon Street, Suite 204, Boston, MA 02135
(617) 277-4463 | email@example.com