National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD)

National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD) NTSAD leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases

For the past six years, NTSAD has had the privilege of speaking to first-year genetic counseling students at Mass Genera...
03/18/2026

For the past six years, NTSAD has had the privilege of speaking to first-year genetic counseling students at Mass General’s Institute of Health Professionals. This year, Family Support and Engagement Manager Becky Benson shared her personal story of her daughter Miss Elliott’s diagnosis with infantile Tay-Sachs, and was also joined by Allison Cerullo, mom to Luca, infantile Sandhoff and Francie DeCambra, mom to Nate, late infantile GM1. Together, they discussed the importance of delivering devastating news gently and ethically, and how organizations like NTSAD can be an invaluable resource for supporting genetic counselors throughout their careers.

After the presentation, the students in attendance shared the impact the discussion had on them, including the importance of not shying away from sharing difficult news. One student shared: "This experience reminded me how powerful it is to hear directly from families about their diagnostic journeys. It also reinforced how important it is for genetic counselors to connect patients with advocacy groups and support networks."

NTSAD community member, Rachel Turner, who lives with Late Onset Tay-Sachs Disease, spoke at the Connecticut Rare Diseas...
03/17/2026

NTSAD community member, Rachel Turner, who lives with Late Onset Tay-Sachs Disease, spoke at the Connecticut Rare Disease Advisory Council this week. Rachel shared her personal story, advocating for all families coping with Tay-Sachs Disease.

As we celebrate March and Saint Patrick's Day, we are reminded of the importance of carrier screening, particularly give...
03/17/2026

As we celebrate March and Saint Patrick's Day, we are reminded of the importance of carrier screening, particularly given the higher prevalence of certain lysosomal storage diseases among individuals of Irish descent.

Carrier screening is recommended for anyone planning a pregnancy or who is already pregnant, regardless of their ethnicity or family history of genetic diseases. Ideally, carrier screening should be performed before pregnancy to allow couples to learn about their reproductive risk and explore options available.

About 1 in 27 people of Ashkenazi Jewish descent is a carrier of Tay-Sachs disease. If you have Ashkenazi heritage, it’s a good idea to be screened, even if your partner is not Jewish. People of Irish, Cajun, French Canadian, and Pennsylvania Dutch heritage also experience higher levels of Tay-Sachs disease in their populations.

Check out NTSAD's Variant Database document for more information about each of these diseases, the carrier rates, and incidences. https://ntsad.org/resources-for-professionals/variant-mutation-database/

NTSAD Community Spotlight, after experiencing both love and loss, Judy Gottlieb chose to move forward in her life by sho...
03/16/2026

NTSAD Community Spotlight, after experiencing both love and loss, Judy Gottlieb chose to move forward in her life by showing love. From caring and concern for her own family, she decided to express concern for other children by generously contributing to their futures. In May 2005, The Jeffrey Alan Gottlieb and Stanley N. Gottlieb Memorial Scholarship was created for healthy siblings, two separate memorial college funds at NTSAD to honor her youngest son, Jeffrey Alan Gottlieb, who succumbed to Tay-Sachs in 1975, and her husband, Stanley N. Gottlieb, who passed away in 2001. Since that time over $80,000 was awarded in scholarships. Judy, whose impact was immeasurable passed away in January of 2024.

In honor of Women’s History Month, we celebrate you and your legacy Judy!

NTSAD Community Spotlight: Dr. Cynthia Tifft is a senior clinician at the National Human Genome Research Institute where...
03/13/2026

NTSAD Community Spotlight: Dr. Cynthia Tifft is a senior clinician at the National Human Genome Research Institute where she serves as Deputy Clinical Director and directs the Pediatric Undiagnosed Diseases Program. Dr. Tifft‘s dedication and perseverance in her work has led her to become a long-time and beloved friend to NTSAD, and the rare community alike.

In honor of Women’s History Month, we celebrate you, Dr. Tifft!

NTSAD Community Spotlight: Alexis, Katie, and Allie Buryk. In 2014, the Buryk family launched the Katie & Allie Buryk Re...
03/11/2026

NTSAD Community Spotlight: Alexis, Katie, and Allie Buryk. In 2014, the Buryk family launched the Katie & Allie Buryk Research Fund at NTSAD. To date, the Buryk Research Fund has raised over $1,100,000 for research for Late Onset Tay-Sachs and Sandhoff (LOTSS) diseases with the help of more than 2,400 donors. You may have seen the Buryk Family’s powerful ad which runs quarterly in The New York Times.

In honor of Women’s History Month, we celebrate you, Alexis, Katie, and Allie!

NTSAD Community Spotlight: Dr. Myrtelle May Moore Canavan was an American physician and medical researcher. She was one ...
03/09/2026

NTSAD Community Spotlight: Dr. Myrtelle May Moore Canavan was an American physician and medical researcher. She was one of the first female pathologists and is best known for publishing a the first description of Canavan disease in 1931.

In honor of Women’s History Month, we celebrate you, Dr. Myrtelle Canavan!

Our Annual Family Conference is made possible through the generous support of individuals, families, foundations, and in...
03/04/2026

Our Annual Family Conference is made possible through the generous support of individuals, families, foundations, and industry partners. Sponsors help provide three days of connection, community, and essential support for individuals and families affected by Tay-Sachs, Canavan, GM1, and Sandhoff. There's still time to join as a sponsor—deadline is March 20th.

Learn more and be part of this impact at https://ntsad.org/wp-content/uploads/2025/12/2026-NTSAD-AFC-Sponsorship-Opportunities.pdf.

Send in your nominations for this year's Power of One and Above and Beyond awards!
03/02/2026

Send in your nominations for this year's Power of One and Above and Beyond awards!

Rare happens, rare is real, and rare matters. On this Rare Disease Day, families share their rare truth. ...
03/01/2026

Rare happens, rare is real, and rare matters. On this Rare Disease Day, families share their rare truth.

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