In a world where science advances but preventable tragedies persist, a group of determined Jewish parents shares their heartbreak and a resolute mission. Bonnie Davis from Portland, Ore., Kevin Romer from Boca Raton, Fla., and Shari Ungerleider from Wayne, N.J., have all endured the profound loss of a child to Tay-Sachs disease. Their purpose is clear and unwavering: to ensure no family endures the anguish they have faced.
One family benefiting from the education and screening efforts of these parents is that of Molly Meyers, of Suwanee, Ga., who found hope and joy through genetic testing. She and her husband, Patrick, welcomed a healthy baby boy into their lives, despite both being carriers of Tay-Sachs disease. As September brings awareness to Tay-Sachs, JScreen—a national nonprofit public health initiative (www.jscreen.org)—takes center stage, committed to raising awareness about genetic diseases, providing comprehensive screening, and delivering personalized genetic counseling to help couples plan for the health of their future children.
Tay-Sachs disease is a life-threatening disease of the nervous system that usually presents with symptoms in infancy and leads to death in early childhood. When both parents carry a mutation or change in the Tay-Sachs gene, each of their children is at 25% risk for the disease. Tay-Sachs is more common in people with Ashkenazi Jewish background but occurs in all populations, so Jewish, interfaith and non-Jewish couples are all at risk for having affected children. While some people think that Tay-Sachs has been eradicated, babies are still being born with this devastating disease. The lingering question is why these preventable tragedies persist in our modern world when genetic testing is so readily available. JScreen aims to bridge this gap, advocating for education and providing accessible genetic screening and counseling to arm families with knowledge.
Bonnie Davis’s story with her son, Adam, mirrors this narrative of missed opportunities. Their family endured Adam’s painful decline, unaware that a simple genetic screening could have given them a heads-up about their genetic risk. Bonnie says, “Tay-Sachs is most commonly carried by Ashkenazi Jews, which we both are. Our obstetrician should have met the standard of care and provided us with the option to obtain genetic testing. He didn’t. Most rabbis will counsel Jewish couples to have genetic testing prior to marriage. Ours didn’t. Many Jewish youth learn about Tay-Sachs at religious school or on their college campus. Neither of us did. We fell through the cracks and never knew we needed genetic testing. Knowledge is power, and knowing your carrier status for genetic diseases gives people the power to create a healthy family and avoid the devastation of having a child with a fatal genetic disease.”
Shari Ungerleider, who lost her son Evan 24 years ago, reflects, “Evan’s memory propels me to act, transforming tragedy into a force for good. Raising awareness about carrier screening has become my mission, sparing others the anguish we endured. Preconception carrier screening, coupled with genetic counseling, is essential for all aspiring or expanding families. Identifying carrier couples before conception and guiding them through the impact of their genetic makeup is the essence of our cause. JScreen’s exceptional resource, offering both testing and counseling, propels this mission.”
Kevin and Lisajane Romer’s son Mathew was born in South Florida in 1995. He was diagnosed with Tay-Sachs, despite both parents being tested and told that they were not carriers. “We did everything right. We both got tested beforehand and were told that neither of us was a carrier,” Kevin recalls. The couple later learned that their screening tests had been both administered and interpreted improperly. So, in addition to caring for their dying child, Kevin said, “We made it our immediate mission to improve testing procedures and protocols. We didn’t want any other parents to be blindsided and so we did something about it and founded The Mathew Forbes Romer Foundation.” The Foundation has been a partner of JScreen’s since the beginning to help extend the reach of the JScreen screening initiatives and to build a greater network of impact.
Molly Myers reflects, “Discovering JScreen and their genetic testing through a friend transformed our journey. When my husband and I embraced the path to parenthood, genetic testing felt like a natural step, a tool to access if within reach. As someone with Jewish heritage, the revelation of my Tay-Sachs carrier status wasn’t surprising, but my husband’s positive gene test, devoid of any Jewish lineage, was unexpected. JScreen became our beacon, guiding us through early pregnancy testing. Relief washed over us as we learned our son was a carrier, spared from the disease because he did not inherit both of our Tay-Sachs genes. Today, he’s a 21-month-old bundle of joy and health.”
JScreen stands as a beacon of hope, providing accessible and informative genetic testing and counseling via at-home saliva kits. JScreen’s ReproGEN test, tailored for individuals aged 18-45, screens for more than 200 genetic diseases, including Tay-Sachs and cystic fibrosis. Empowering prospective parents with informed family planning information is the core of this comprehensive approach.
Tay-Sachs disease remains a formidable foe, inflicting progressive neurological damage and untimely death. JScreen’s dedication to raising awareness and offering accessible testing fuels their mission to help families avoid the devastation caused by Tay-Sachs and other genetic diseases, and plan for healthy futures.
JScreen is dedicated to preventing genetic diseases and hereditary cancer. Headquartered in Atlanta at Emory University School of Medicine, the JScreen initiative provides convenient at-home access to cutting-edge genetic testing technology, patient education and genetic counseling services. JScreen believes the combination of education, access to premier genetic screening technologies and personalized, confidential support are the keys to preventing devastating diseases.
Visit JScreen.org for more information.