With the yearly Jewish harvest holiday of Sukkot underway (September 23-30), many in the Jewish community have focused their efforts on building a sukkah , a dwelling, often in one’s backyard, that essentially serves as places to eat and—for people who choose—to sleep.
While sukkahs (this word is the common English pluralization) differ from home to home, all of them are meant to be welcoming places to gather, to converse, and to celebrate. And, as with many Jewish holidays, celebrating with family is a big part of Sukkot, too. Parents and children often build and decorate their sukkahs together in a fun and shared experience.
So, as we think about the connection from one generation to the next, and the concept of building a home, we are struck by the connection this has to our work helping young couples create families. Not just on Sukkot, but every day of the year, we promote and offer genetic screening, and follow-up counseling, to empower people with knowledge before they have children.
While genetic screening and genetic diseases are difficult topics for some to discuss, these conversations with the follow-through of screening are paramount.
“If a couple knows their carrier status prior to pregnancy, they have ample time to seek genetic counseling, gain information about the disease(s) that they carry, and make family planning decisions that will best suit them,” said Shari Ungerleider, whose son, Evan, tragically died of Tay-Sachs disease.
Within months of his seemingly healthy birth in 1994, Shari and Jeff Ungerleider became concerned as they realized that Evan was not developing at the same pace as other children his age. By the time he was 10 months old, it was clear there was a significant problem. Evan’s condition quickly progressed, and he was soon unable to move on his own, suffered multiple seizures daily, and had respiratory difficulty which required the Ungerleiders to provide chest physical therapy and to suction him regularly. He eventually became blind and deaf. They had a feeding tube surgically inserted so that Evan would be able to stay properly nourished and medicated. He had to undergo several hours a week of physical and occupational therapy so that his muscles would not atrophy. Evan lost his battle with Tay-Sachs when he was almost 4 ½ years old.
The Ungerleiders have shown great courage in continuing to speak out about their experience in the hopes that it will help families learn the important steps they can take towards starting a healthy family. Particularly timely during September—which is also Tay-Sachs Awareness Month—the Ungerleiders and JScreen, a not-for-profit community-based public health initiative, are working to teach anyone who is planning to start a family, whether tomorrow or years from now, that simple, easy genetic testing can help save them from the heartbreak of these often preventable diseases.
Currently, 80 percent of babies with genetic diseases are born to parents with no known family history of that disease.
JScreen’s expanded screening panel tests for more than 200 diseases, a significant development from a generation ago.
In July 2008, the United States Senate voted unanimously to name September National Tay-Sachs Awareness Month in an effort to bring additional attention to this deadly disease. When both parents are Tay Sachs carriers, each child has a 25% of having the disease. While the incidence of babies born with Tay-Sachs has fallen dramatically due to genetic screening, affected babies are still being born to carrier couples who have not been tested.
A simple, at-home spit test can help families avoid the heartbreak of this – and other – devastating genetic diseases, and can provide essential information to help prospective parents make decisions about the future of their family. If a couple is found to be at high risk, JScreen provides invaluable genetic counseling to help them navigate their options for the future.”
It is therefore fitting that the celebration of Sukkot falls during Tay-Sachs Awareness Month. By focusing on issues that matter the most, like family, and building dwellings—like a home— Sukkot helps remind us that there are many steps that can be taken to start a healthy family and to build a happy home.
For more information on genetic testing, and to see videos on how easy it is to take the test, visit https://jscreen.org/
Karen Grinzaid is an instructor, program director and genetic counselor at Emory University in the Department of Human Genetics. She is director for JScreen, a national online Jewish genetic disease screening program based out of the Department of Human Genetics.
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