Leading the worldwide fight to treat and cure
Tay-Sachs, Canavan, GM1 and Sandhoff diseases

NTSAD News

NTSAD 2022 Ad Calendar

Dedicated to Two Special People: 

Sue Kahn, Executive Director and in Memory of Sue Sirot, Annual Calendar Chair

View the 2022 Calendar.

The NTSAD Annual Calendar raises funds to lead 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.

NTSAD's Executive Director Sue Kahn is stepping down after 14 incredible years.  We plan to celebrate and honor Sue for her extraordinary dedication to the mission of NTSAD. We remain grateful to Sue for creating a culture of unprecedented collaboration, advancing research leading toward multiple clinical trials, and above all else, supporting families. Under Sue’s leadership, NTSAD remains a leading patient advocacy organization that provides comprehensive resources, programs and services, while also continuing to drive and fund research.

Sue Sirot, who lost a daughter to Tay-Sachs disease many years ago, was dedicated to the mission of NTSAD.  Along with her husband Gus, Sue helped to raise funds to support education and carrier screening for prevention and grants for research to find a treatment and cure for Tay-Sachs and related genetic diseases. The Annual Calendar has been the fundraising project that Sue and Gus have led for many decades, raising thousands of dollars each year to fund NTSAD programs. The NTSAD community is grateful for all that Sue did in her lifetime as an NTSAD volunteer in the New York area and as a super fundraiser. May she rest in peace, knowing we will continue to support the mission of NTSAD. 

 

Step one: Place your ad by November 15, 2021 using this form. Please type your ad copy on the form. Then email This email address is being protected from spambots. You need JavaScript enabled to view it., or mail the form to the NTSAD office. 

Step two: Pay for your ad by either enclosing your payment within the form and mailing it, or by paying online here.

To make a non-ad donation to the 2022 Ad Calendar go here. 

View the 2022 Calendar. 


COVID-19 message from NTSAD

The Impact of COVID-19 is ongoing and remains uncertain. We are following recommendations and doing what is best for our community.

We hope that you along with all of our friends, partners, and supporters are managing as best as you can as we live through this unprecedented time.
 
NTSAD's office in the Boston area remains closed in accordance with the Governor's declaration; however, we want to assure you that the NTSAD staff continues to work remotely to support families and to sustain our important mission.
 
During this time, we are in touch with our families, researchers, clinicians, partner organizations, and industry members. We are offering specialized programming and critical information as it relates to the coronavirus and its impact on our rare disease community. 
 
We're here for you. Connect with us at This email address is being protected from spambots. You need JavaScript enabled to view it. and we can set up a phone call or even Zoom chat to talk about your questions and concerns.
 
We value you and our community. We thank you for your long time support of NTSAD. If you are able to support NTSAD, please give now.
 

Consider following the latest news on the Centers for Disease Control (CDC) website here or the World Health Organization (WHO) here to keep yourself and your family healthy.

 

2nd Annual Million Dollar Bike Ride (MDBR) Request for Proposals

2015 Research Grant Opportunity

Made possible by Team NTSAD, National Tay-Sachs & Allied Diseases Association (NTSAD), 

and the Orphan Disease Center at PennMedicine

The 2015 Million Dollar Bike Ride Pilot Grant Program is now open. 

One $43,000 pilot grant is available focusing on forms of Tay-Sachs, Sandhoff, GM-1, or Canavan disease. We are soliciting proposals for innovative research projects that involve basic research, translational studies or clinical studies relevant to the diseases mentioned above.  Projects may be focused on (1) technology approaches such as stem cells, molecular chaperones, substrate inhibitors, small molecule drug screening, gene therapy, novel drug delivery to the brain or on (2) other pre-clinical and clinical research needs, such as clinical outcome measures, registries, animal models, or biomarkers

This grant is made possible by Team NTSAD, the National Tay-Sachs & Allied Diseases Association, and the Orphan Disease Center at PennMedicine.

Please first review the RFA guidelines before submitting your pre-application using the web form below.  All pre-application submissions are due

Monday, September 14, 2015 by 5:00 pm (EST).  If your pre-application is approved, you will be notified with an invitation to submit a full-application, due October 19, 2015.

For questions regarding this pilot grant program, please contact Samantha Charleston at This email address is being protected from spambots. You need JavaScript enabled to view it., or (215) 573-6822.

Click here to view the 2015 MDBR Pilot Grant RFA Guidelines: 2015 MDBR Pilot Grant RFA Guidelines

Click here to submit your pre-application: 2015 MDBR Pre-Application

 

 

Last year's Million Dollar Bike Ride Grant recipient was Dr. Annette Bley, a pediatrician from Germany. She was awarded a grant to study the natural history of Canavan disease (CD). This work will allow Dr. Bley and others to learn more about the natural course of CD and to develop quantifiable measures of the disease. 

 

 

2015 Research Grants Awarded

$266,000 Awarded

NTSAD is pleased to announce the 2015 Research Initiative Grants totaling $266,000 thanks to many generous research supporters.

This year NTSAD solicited proposals for innovative research projects that involve

  • basic research
  • translational studies or
  • clinical studies

Grant awards were based on final proposal evaluations by a Research Evaluation Subcommittee of NTSAD's Scientific Advisory Committee and other scientists who generously volunteered their time. Grants were made for a one to two year period for up to $40,000 per year. (Funding for a second year is predicated by adequate progress during year one.

View the full Request For Proposal

View Press Release

NTSAD would like to thank all of those that submitted an application this year. The pool of applicants was highly competitive and numerous proposals were conducive to the NTSAD mission. At this time NTSAD congratulates the five awardees for the 2015 research grants and includes their summaries below.

The Awards

Denis C. Lehotay, PhD, Principal Investigator
University of Saskatchewan College of Medicine

Project: Development and validation of a rapid, MS/MS-based method
to detect Hexosaminidase deficiency in Tay-Sachs disease

Douglas R. Martin, PhD, Principal Investigator
Auburn University

Project: Intravascular gene therapy for feline GM2 gangliosidosis

Heather A. Lau, MD, MS, Principal Investigator
Paola Leone, PhD, Co-Investigator
New York University
The Canavan Foundation, Co-funder

Project: Defining the Natural History of Canavan Disease through Development of an International Registry


The following two grants are made possible by the Katie & Allie Buryk Research Fund of NTSAD:

Florian S. Eichler, MD, Principal Investigator
Massachusetts General Hospital

Project: Registry and Repository for Late Onset GM2 Gangliosidoses

Eric R. Sjoberg, PhD, Principal Investigator
OrPhi Therapeutics

Project: Generation of a knock-in mutant Hexb mouse model

Project Details

For a description of each project's goals and impact, read more at 2015 Research Initiative Grants

About the Research Grant Initiative

NTSAD has maintained a strong commitment to funding research over the years to advance its mission to lead the fight to treat and cure Tay-Sachs, GM-1, Sandhoff, Canavan, and other related genetic diseases. Read about the NTSAD Research Initiative including highlights and past awards.

NY Times: Challenge Describes Late Onset Tay-Sachs

On May 7, 2015 the New York Times Well blog, Think Like a Doctor, presents the symptoms reported by twin sisters, Katie and Allie Buryk. Readers are asked to figure out the diagnosis and comment. The patient history, neurological notes and blood test results are offered as clues. Read the blog entry here: http://well.blogs.nytimes.com/2015/05/07/think-like-a-doctor-taking-a-stand/?ref=health&_r=0

Almost 300 responses were made. The New York Times posted on May 8 the diagnosis being Late Onset Tay Sachs and describes how the diagnosis was made. Less than a handful of the reader's comments mentioned Late Onset Tay Sachs. Read the blog diagnosis entry here: http://well.blogs.nytimes.com//2015/05/08/think-like-a-doctor-taking-a-stand-solved/

 

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News Blog

Articles published in the News Blog will have the headline appear on the web site's home page and also be listed on the News landing page with "read more". 

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