About Us

Where does the money go?

• Research
• Education
• Carrier Screening
• Genetic Counseling
• Family Services
• General operating expenses are less than 5% of funds raised

RESEARCH

NTSAD NY AREA has contributed more than $150,000 to support the NTSAD Research Initiative as a partner in this effort by the National office of NTSAD. These projects are funded by the the general fund of NTSAD-NY, as well as by the restricted funds of the Ungerleider and Hoffman families. NTSAD grants are already leading to significant follow-on funding, with NTSAD-funded gene therapy research resulting in a $1.2 million dollar award from the National Institutes of Health (NIH) for further work.

A special research grant of $10,000 was awarded to the Dor Yeshorim Program for a project for an Umbilical Cord Blood Registry & Bank.

EDUCATION

NTSAD NY Area promotes public and professional education by supplying educational brochures and speakers to educate medical professionals, the clergy and the general public about Tay-Sachs and the allied diseases. The NTSAD NY Area website has general information and is updated to list fundraising events and carrier screening programs. Our newsletter, UPDATE, keeps our members and the community informed. The newsletter is posted on our website.

NTSAD NY Area participates as a member of the Jewish Genetic Disease Consortium - a committee of genetic disease groups for the purpose of promoting education and awareness. The Consortium has received a grant to do a Grand Rounds presentation to OB/GYNs at area teaching hospitals and participates in various conferences to further the education of clergy and medical providers about Jewish genetic diseases. The Consortium has been represented at various rabbinical conferences and major conferences for leaders of the Jewish community. The goal of the Consortium is to raise awareness about the availability of carrier screening which can ultimately prevent the birth of affected children. The Consortium is working with Hillels to further education about Jewish genetic diseases for students on college campuses.

As a member organization of the Genetic Disease Foundation, NTSAD NY Area participates in educational outreach to physicians and has a continuing relationship with the carrier screening and research programs of the Human Genetics Department of the Mount Sinai School of Medicine.

CARRIER SCREENING

NTSAD NY Area supports carrier screening programs through grants to the Department of Neurology at NYU School of Medicine and Regional Medical Genetics in Westchester. Community carrier screenings days have been funded at Department of Human Genetics at Mount Sinai Medical Center, Saint Barnabas Hospital in New Jersey at the JCC of Mid-Westchester.  Working with the Jewish Genetic Disease Consortium, NTSAD helped secure a grant from the March of Dimes to provide carrier screening for students on college campuses in Westchester and Rockland Counties in New York.

NTSAD NY Area supports the Dor Yeshorim Program, a unique pre-marital carrier screening program in the Orthodox Jewish community.

A medical equipment grant has been given to the Department of Human Genetics at Mount Sinai Medical Center for the purchase of a flurometer which measures Hex-A for Tay-Sachs carrier screening and prenatal diagnosis.

GENETIC COUNSELING

A genetic counselor is available through NTSAD NY Area to provide counseling and to assist individuals and families in the referral to appropriate genetic counseling services. The genetic counselor provides outreach programs to the community and medical resources.

FAMILY SERVICES

Each year the NTSAD national organization holds an Annual Family Conference at which affected families can meet and get the latest medical information about the various diseases. NTSAD NY Area has been an important source of funding for this conference, with grants for scholarships for families to attend the conference.