This past week I attended a very important seminar presented by the Genetic Jewish Disease Consortium. It is an umbrella organization representing a number of organizations that work with assisting in the research, treatment, and prevention of Jewish Genetic Diseases. This new initiative seeks to provide education about this important issue.
One of the presenters had a personal story to tell of her son born with Tay Sachs in 1995 who did not make it past his fifth birthday, and the video portrayed another mother who has two children with ML4. In attendance was also a local Jewish father who has a son with ML4. Their stories were all heartbreaking and provide a real call for action for an area where education and prevention can avoid so much sorrow.
There are a couple of factors that I believe have been somewhat of a deterrent for some.
In the past there was perhaps a “stigma” associated with finding out if someone was a “carrier” of a certain Jewish Genetic disease. In fact, some of the services, such as Dor Yesharim, will simply tell the couple whether they are a match without giving any specifics.
Nowadays, there is open testing available whereby an individual can know whether they are a carrier. The panel for Jews of Ashkenazic descent currently has nineteen Genetic Diseases that are tested and a different panel for Jews of Sephardic or Mizrachi descent.
There is a misconception that if a couple were to find out that they were both carriers of a certain disease this would prevent them from getting married and having children. While this knowledge does present a challenge, there are many different options to consider, especially with the rapid development of scientific technologies.
A second impediment is cost as many couples, especially younger couples, balk at the idea of spending money for an expensive test. I would suggest that no matter the cost this is an important enough issue that it should be given priority as far as pre wedding expenditures. Regardless, there are services that highly subsidize tests to make them affordable for anyone, and there are even funds available for those who cannot afford the test.
The main point I want to convey is that there is simply no excuse for not being tested. If you are thinking of starting a family, please make sure you have armed yourself with the knowledge that can save much heartache and lead to much health and happiness.
Tests can be obtained at several local health care facilities or through national testing centers such as JScreen based out of Atlanta. Gift certificates are available for parents to buy for their children and future grandchildren.
Please contact me if you have any questions or concerns.
Looking ahead
Pirkei Avot: We will begin this week the second Chapter of Pirkei Avot, 5:30pm in Brookridge park. Several members will be presenting Mishnayot as well!
Congregational meeting: Sunday morning, 9:30am!
Yom Hazikaron/Yom Haatzmaut: In addition to the communal programs, we will have a special Tefillah Chagigit (celebratory Maariv prayer service) on Monday evening at 9pm.