Knowledge. Counseling. Screening. Jewish Genetic Diseases

Our Stories

Lois Victor’s Story

“Let me tell you why this is so important to me. My daughter Debbie was sick from the day she was born and probably never had a good day in her 8 years of life. Linda, more functional, experienced problems every single day and, at age 35, was hospitalized for the last time. What does …

Dr. Schneider’s Story

Screening before pregnancy Dr. Adele Schneider became interested in genetics as a medical student after visiting a home for children with disabilities. As a medical geneticist, she has witnessed remarkable advances in the field and in practice. “As science was evolving, more diseases became available for testing, and the lab technology supported greater efficiency. Jewish …

Rabbi Larry’s Story

“Pikuach Nefesh: Saving a Life” Larry feels privileged to be a father, husband and family man. However, his oldest child, Sammy, has Familial Dysautonomia. “On a bad day Sammy sits home retching, his blood pressure and temperature out of control.” Larry confesses as a Rabbi he never knew the deep sadness and anger, the sense …

Cindy's Story

A Mom and an Advocate Her life changed in 1996, the day Dylan was born. Back then, doctors told Cindy her concerns about her baby’s health were nothing more than the fears of a new mom. Cindy knew better. A few months later, Dylan was diagnosed with an incurable disease called Familial Dysautonomia (FD). Dylan …

Tara's Story

Preparing for the future Tara is focused on work and college today and a career and family for the future. In her early twenties, Tara is Ashkenazi Jewish on both sides and deeply connected to her heritage. She shares her commitment to Jewish learning and values in her role as a synagogue youth group leader. …

Danielle's Story

Knowledge into Action Danielle knew her carrier status long before she was married or thought about having a baby. Screened at a campus event while still in college, the results of her test were anything but academic. “I was surprised to learn I was carrying a disease that I knew nothing about,” Danielle says. After …

Shari's Story

A Personal Story About the Importance of Pre-Conception Testing In every corner of Judaism, both culturally and spiritually, we are commanded to “celebrate life.” That was precisely my intent in the spring of 2008 as I (and my husband Stuart) prepared to start a family. It was an extremely exciting time for us and, like …

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