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 $110,000 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 available programs. Our newsletter, UPDATE, keeps our members and the community informed. Te 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 plans to participate in various conferences to further the education of clergy and medical providers about Jewish genetic diseases. The Consortium was represented at the Conference of Reformed Rabbis in Houston in November. This was the first national educational endeavor for the Jewish Genetic Disease Consortium since it was formed, with plans to attend similar conferences. The goal of the Consortium is to raise awareness about the availability of carrier screening which can ultimately prevent the birth of affected children.

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. Several community carrier screenings days have been funded at Department of Human Genetics at Mount Sinai Medical Center and at Saint Barnabas Hospital in New Jersey.

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.