When it was founded in 1957, the National Tay-Sachs & Allied Diseases Association was no more than a group of New York parents who had dedicated themselves to ending Tay-Sachs and the genetic diseases related to it. Tay-Sachs may still be around, but at the NTSAD’s 50th anniversary gala in October, the group will have much to celebrate.
Since its humble beginnings, the organization has made enormous strides in both helping to prevent the disease and aiding families grappling with it. In its half-century of existence, the association has been involved in everything from research and testing to establishing an extensive support network for parents.
In the ’70s, the NTSAD helped fund the first mass-screenings for Tay-Sachs, a practice that it continues to this day. The group has helped fund biannual research symposia and has been active in giving seed grants to researchers, who then can take their results to such wealthier sponsors as the National Institutes of Health.
The NTSAD also has been an active educator, publishing newsletters, visiting schools and performing genetic counseling.
If there is an arena in which the group has evolved, it is fundraising. The group, which once relied on lavish gala dinners to raise money, now looks more to smaller community-run efforts, like walkathons and home-run derbies.
But with its golden anniversary this fall, the NTSAD will be “recapturing some of that old magic,” said Kim Crawford, the association’s director of member services. The dinner, said Marion Yanovsky, co-president of the association’s New York chapter, has been designed “to celebrate progress that’s been made — and to look to the future.”
And what does that future hold?
Ultimately, Yanovsky said, the hope is to eliminate Tay-Sachs and “put ourselves out of a job.”