Shari Ungerleider from New Jersey and Myra Sack from Boston share a heartbreaking bond: each lost a child to Tay-Sachs disease. Shari’s beloved son, Evan, passed away more than 25 years ago, while Myra’s daughter, Havi, died in 2021. Even after decades of progress in medicine, babies are still being born with Tay-Sachs and other devastating genetic diseases.

The challenge is to prevent such suffering; the solution is simple: comprehensive genetic screening and personalized counseling for prospective parents.

Shari and Myra are now advocates for genetic testing, supporting the work of jscreen®, a national nonprofit initiative dedicated to preventing genetic diseases through education and preconception genetic testing.

This September, for Tay-Sachs Awareness Month and the Jewish New Year, jscreen is raising awareness so every family can plan for a happy new year and a healthy future.

Shari, who serves as Outreach and Education director at jscreen.org, said, “Not a day goes by that I don’t think of Evan and miss him. I wanted to honor his memory by turning our tragedy into something positive. Raising awareness about genetic testing helps spare other families the suffering we experienced. Reproductive carrier screening, paired with genetic counseling, identifies couples who are at risk and provides them with options to ensure a healthy future for their children.”

Myra wrote “Fifty-seven Fridays: Losing Our Daughter, Finding Our Way,” a memoir about Havi’s short but meaningful life and her parents’ struggle to help her live and die with dignity.

Since Havi’s passing, Myra and her husband, Dr. Matt Goldstein, have found purpose in their grief. Matt has become the CEO of jscreen. Myra is now certified in Compassionate Bereavement Care, serves on the board of the Courageous Parents Network, and founded e-motion, Inc., a nonprofit supporting families living with loss.

“Losing Havi changed everything for our family,” said Myra. “We’re devoted to serving the world with grace, compassion, and courage — the essence of Havi. Jscreen is a community with compassionate leadership, cutting-edge science, and the power to save lives.”

Jscreen makes genetic testing simple, accessible, and affordable through at-home saliva test kits, including a Reproductive Carrier Screen that tests for more than 260 diseases; if results reveal that a couple is at increased risk, jscreen provides telehealth genetic counseling, and Hereditary Cancer Test, a separate test for genetic mutations linked to risk for breast, ovarian, colorectal, and other cancers, enabling prevention or early treatment.

“A simple at-home saliva test can spare families heartbreak,” said Karen Arnovitz Grinzaid, founding executive director of jscreen. “We’re here every step of the way to provide education, genetic counseling, and support so families can make informed decisions about their future.” — jscreen

For more information, visit jscreen.org.