A Short Film: The Jewish Genetic Disease Consortium
We invite you to watch this 13 minute film about the impact of Jewish genetic diseases on parents, children and families. The video features the stories of a family who lost a child to Tay-Sachs, a family with two adult children with ML-4, and a woman living her life with Bloom’s Syndrome.
Since this video was made, the number of diseases affecting persons of Ashkenazi Jewish heritage has increased from 16 to 38. In addition,16 diseases affecting persons of Sephardic or Mizrahi Jewish heritage has been included.
If you were at risk of having a child that could be unable to speak, walk or talk, wouldn’t you want to know? That’s the principle behind a program based here in New York that is educating Jewish couples about a series of rare yet devastating disorders.
This is Randy Yudenfriend Glaser. Her daughter, Lauren, is confined to life in a wheelchair. She can’t speak, and needs around the clock care. Lauren has Mucolipidosis Type 4, a genetic disorder found more frequently in Ashkenazi Jews than the general population.
Randy’s son Jonathan also has the disease. A pregnancy screening failed to detect his condition. The pain of caring for two disabled children led Yudenfriend Glaser to co found the Jewish Genetic Disease Consortium – which helps educate the public about the existence of these serious conditions.
The program she helped create has a way to prevent that heartache: screening and education. The Jewish Genetic Disease Consortium wants Jewish couples thinking of starting a family to get screened by a doctor before they become pregnant. The goal is to find out if they carry the genes for one or more of the 19 screenable Jewish genetic diseases. If both parents carry a gene that corresponds with a particular disorder, they have a 25 percent chance of having a child that suffers from it.
And who else better to serve as educator than a rabbi? The JGDC works with rabbis like Deborah Bravo to help them provide premarital counseling on screening and options.
Options for at-risk couples include adoption or selective in-vitro fertilization, allowing doctors to select a fertilized egg that won’t produce a child with a disease. Once the woman is pregnant with an affected child, Bravo says, the options are limited to having the child or terminating the pregnancy.
Unfortunately the risk that a couple can have a child with one of these rare diseases can never be fully eliminated. But thanks to work of some passionate people, Jewish couples can at least understand the risks and how to mitigate them.
Quinn Bowman, JN1, New York