A Champion of Genetic Screening

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As Co-Founder of JScreen, Caroline Gold ’92S Promotes Healthy Jewish Families

Caroline (Katz) Gold ’92S came to Stern College for Women in 1988, where she found a community as warm and friendly as the sunny climate of her native Atlanta, Georgia. “Coming from Atlanta without relatives nearby,” she recalled, “the families of my friends became my extended family, welcoming me for countless shabbats and chagim [holidays] when I was not able to fly home. Many of the women I met at Stern then are among my closest friends today.”

At Stern, she majored in psychology, eventually receiving a bachelor’s in the discipline. “I have always had an interest in what makes people who they are,” she said. “Motivation, decision making, and processing are different for everyone, and what better way to understand the human condition than to understand the psychology behind it?”

Being at Stern also gave her many gifts that she has treasured throughout her life. She loved living in New York City: “That was an invaluable experience because of the independence and confidence I gained while I was there.” She also cherished the chance to meet women from all over the country and to learn from expert Judaic and secular teachers.

Gold went on to earn a master’s degree in special education from Adelphi University in Garden City, New York, which prepared her for her early career teaching special education in Georgia’s public schools. She also met Randy, her husband, while still living in New York City. “While I was dating him, my friends from Stern gave him the once-over, and, lucky for me, they approved. Many of these women have become an integral part of our family.”

In 2008, however, their second child, Eden, was diagnosed with a neurodegenerative disease called Mucolipidosis Type IV (ML4). The prognosis for children with ML4 is that they will never learn to stand, walk or talk; have a mental capacity of about 18 months; go blind by the time they are 12; and only live until early adulthood. “In an instant, every dream we had for our daughter was shattered.”

The couple had been tested before they were married for genetic diseases related to being Jewish, but neither of their doctors screened them for ML4. “Our immediate response to Eden’s diagnosis,” she said, “was to make sure that this situation didn’t happen to another unsuspecting couple.” To remedy what they saw as a serious lack of knowledge about screening for Jewish genetic diseases in the medical, rabbinic and young adult community, in 2010 they created the first genetic screening program supported by rabbis across the country, an effort that eventually grew into a nationally recognized screening program called JScreen.

“Our objective is to create a comprehensive, accessible and affordable means of genetic screening through a simple saliva test so that every couple knows the results of over 100 genetic diseases affecting the Ashkenazic, Sephardic, Persian and Caucasian populations,” she explained. With test results in hand, people then have the knowledge and the power to make informed medical and familial decisions.

Since the founding of JScreen, thousands of people in all 50 states have used the organization’s services. In 2016, a partnership with YU helped 1,200 people undergo the testing, and JScreen has also been busy building partnerships with organizations like JCCs and AIPAC as well as synagogues, rabbis, physicians and Jewish community leaders. “Our goal has always been to make Jewish genetic disease screening a Jewish communal issue, so by empowering the patient and destigmatizing carriership (carriers like Randy and me are perfectly healthy), JScreen provides information that helps create healthy Jewish babies.”

Now nine years old, Eden goes to a school designed for children with severe special needs, receiving 8 to 10 hours of therapy every week. She doesn’t yet stand or talk, and her vision is significantly impaired, “but she is making progress: she is definitely the hardest worker I have ever seen and is absolutely inspiring.”

With JScreen’s success as a national program, Caroline and Randy turned their attention to the ML4 Foundation whose mission is to fund, support, and promote medical research dedicated to developing treatments and a cure for ML4. They have quickly become the leading catalysts behind the organization and have earned the respect of researchers, philanthropists and other families suffering from the disease. “We have funded some incredible and potentially life-changing gene therapy in the brain and retina, drug therapy focused on changing the disease mechanisms, and other groundbreaking science at institutions like Albert Einstein College of Medicine, Harvard Medical School and Weizmann Institute of Science as well as at other institutions in Italy and Germany.”

In the midst of all this important activity, life in the Gold household goes on. Eden’s siblings – Natanel, 11, and Shai Emunah, 5 – are part of a family that’s very active in the Jewish community. “Randy and I both grew up in homes that were open and welcoming to all, and our home is much the same,” said Gold. It’s not uncommon for the Golds to have 25 guests for a Shabbat meal ranging from educators, scholars, rabbis, entrepreneurs, scientists and everything in between.

“I am so grateful for the opportunity to have attended Stern,” she said. “I tell my kids that I grew up in New York, which in a way is true, because even though my upbringing was in Atlanta, I really did grow up with so many great experiences while at Stern.”

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The Gold family at home: Randy and Caroline with (left to right) Natanel, Eden and Shai

 

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