For Jews of central and Eastern European descent — and even non-Jews who have that ancestry — there is a one in four chance of being a carrier of at least one of 19 preventable genetic diseases.
In the past, prospective parents had no way of knowing whether they were carriers of a genetic disease that could threaten the health and life of their children, until it was too late and a child became sick. Many of these diseases strike in childhood, have no cure, and can lead to an early death.
On Jan. 13 from 11 a.m. to 4 p.m., there will be a community-wide screening for those 19 genetic diseases in Birmingham, at the Levite Jewish Community Center.
The Birmingham Jewish Federation and Foundation will host this screening in partnership with the National Victor Center for the Prevention of Jewish Genetic Diseases at Einstein Medical Center in Philadelphia, and in collaboration with physicians from the Department of Genetics of the University of Alabama at Birmingham.
A simple blood test is all that is necessary to screen for the Jewish genetic disease panel of 19 conditions. The Victor Center recommends that all at-risk individuals, including interfaith couples and couples getting pregnant through donor egg or sperm, should be screened, with the Jewish partner being screened first.
Individuals with one or more Jewish grandparents are considered at risk. Couples should be screened prior to each pregnancy for any new diseases, since there have been new advances in testing, and the list of known genetic diseases is constantly being expanded.
“The importance of being screened goes far beyond just finding out if you are a carrier,” said Caren Seligman, coordinator of this project. “This affects the life of an entire family. We are fortunate to be able to test for 19 known diseases that are preventable with a simple blood test. This is a critical public health issue for the Jewish community and we are proud to be partnering with the Victor Center in creating awareness and hosting a screening in Birmingham.”
The 19 diseases are inherited through autosomal recessive genes. If both parents carry the gene, there is a one in four chance that a child will have the disease.
While Tay-Sachs is the best-known Jewish genetic disease, there are many others, including cystic fibrosis, Bloom syndrome, Fanconi Anemia, Gaucher disease, spinal muscular atrophy and Walker-Warburg syndrome.
The Victor Center for the Prevention of Jewish Genetic Diseases works in partnership with healthcare professionals, clergy and the community to create awareness about the need to be screened for the 19 preventable genetic diseases. There are currently Victor Centers in Philadelphia, Boston and Miami and community programs in partnership with the National Victor Center in Atlanta, Dallas, Pittsburgh, San Diego and now a new partnership in Birmingham.
Individuals are encouraged to pre-register online and may obtain information regarding insurance coverage and costs here.