Newsletters and Publications
NTSAD Newsletters
Breakthrough
Each year NTSAD publishes Breakthrough, a newsletter for friends and supporters that focuses on the latest advances in research, profiles of families and individuals helped by NTSAD and disease profiles.
Late Onset Community Newsletter
PSG members dealing with chronic forms of the allied diseases receive the Late Onset Tay-Sachs Community Newsletter, a bi-monthly newsletter focused specifically on the issues and perspectives unique to adults struggling with long-term disability issues. Public editions of the newsletter are also available.
To be added to the mailing list for any of the above newsletters please send an email to Info@ntsad.org with ‘SUBSCRIBE' in the subject line and which newsletter you would like and your name, address and phone number in the body of the email. |
Lifeline
This aptly titled quarterly newsletter is published by and for NTSAD members is distributed to members only, to learn more about membership (Insert link to top Members Section tab). The editorial content is wide ranging: symptom management and home health care; new product reviews; guidance in benefits and services advocacy for families and affected individuals of all ages; science and medical research updates; coverage of NTSAD events, fundraising, programs and administrative activities. Members contribute articles including essays and poetry that help boost morale of the readership, deepen their connections to each other, and honor or memorialize loved ones.
Topic of the Week
NTSAD’s weekly e-communication sent every Friday afternoon.
To receive the topic please send an email to Info@ntsad.org with ‘Subscribe’ in the message.
NTSAD Publications and other educational materials
What Every Family Should Know (Sixth Edition)
A 50-page booklet detailing lysosomal storage and leukodystrophy disorders, with sections on Tay-Sachs, Sandhoff, Niemann-Pick, Gaucher, Canavan, Fabry, Pompe, therapeutic approaches and unique disease table.
What is Canavan Disease? (click here for download)
The educational pamphlet describing Canavan Disease.
What is Tay-Sachs? Russian translation (click here for download)
This informative educational pamphlet describing Infantile Tay-Sachs, its inheritance and prevention is available for no charge.
The Home Care Book (click here for download)
Written by parents for parents and professionals, the Home Care Book is a guide to caring for children with progressive neurological disorders at home.
Late Onset Tay-Sachs Fact Sheet (click here for download)
This quick reference information sheet on the chronic or late onset form of Tay-Sachs is available for no charge.
The Fact about Genetic Disorder for Persons of Ashkenazi Jewish Decent
This freely distributed brochure produced by Genzyme Therapeutics details diseases common to the Ashkenazi Jewish community. NTSAD is often contacted by Ashkenazi Jews for assistance with their Tay-Sachs carrier test but do not realize that the ‘Jewish Panel’ includes 9-11 disorders, not all of which fall under the NTSAD umbrella.
What Every Bride Should Know (click here for download)
Article about including carrier screening in wedding preparations is available for no charge.
NTSAD is pleased to offer these important educational materials free of charge and hope you will consider making a donation to help defray our costs. (click here to make a donation) |
For information regarding ordering in quantity please send an email to Info@ntsad.org and include which materials you would like, how many and for what purpose. Materials available free of charge may have a shipping fee depending on quantity.