Jacob is afflicted with Canavan disease, a devastating genetic brain disorder. He's now 10 years old and as amazing as ever, defying all odds! In September 2000 his mother, Jordana, founded Jacob's Cure, a non-profit foundation to help find a cure for Canavan disease. Learn More
I went through the Jewish genetic screening program and learned I was a cystic fibrosis carrier. My daughter Hannah was later screened as part of her newborn panel done immediately after birth. Because I was aware of my carrier status, we were able to make informed decisions about family planning, and we understand (and were prepared for) what it means to have a child who is also a carrier. Interestingly, genetic testing figured into how we know that Hannah and her twin sister Abbie are fraternal (not identical) twins. Abbie is not a carrier!
If you’re thinking about being screened for Jewish genetic diseases, there’s no debate. You MUST do it … for yourself, your current family and your future family. It’s selfish to think otherwise. If you are ready to have a child, it is your responsibility to make sure you do everything in your power to give it the best life possible, and getting tested to see if you are a carrier for a Jewish genetic disease is a great first step.
I’m not married and not at the point when I’m even considering a pregnancy, but I know that not all things in life are planned, and it’s always best to be prepared. I was tested because I would hate to cause harm to a potential child that I bring into this world. Plus, testing was easy and inexpensive, thanks to the subsidy available through the Jewish Genetic Diseases Center.
What a wonderful mitzvah this organization does! The process was fast, easy, relatively painless and very affordable. Thank you for all you do to help young couples have healthy babies!
When it came time for my husband and I to decide whether or not to participate in the Jewish Genetic Diseases Center public screening, he wasn’t sure he saw the merit in testing because he’s not 100% Ashkenazi. I’m so thrilled we opted to do it because as a result we found out he is a carrier for Cystic Fibrosis. The genetic counselor suggested we undergo further testing for the CF gene to ensure I was not a carrier for the same marker he was carrying. Thankfully, we found that I was not a carrier. We are so grateful for Dr. Minkoff and his team’s expertise. The Jewish Genetic Diseases Center of Greater Phoenix is an absolutely phenomenal organization, and we encourage all couples of Jewish descent who are planning to conceive to participate and support this wonderful organization!
It’s been seven years since his sister participated in the Jewish genetic-testing program sponsored by the Greater Phoenix Genetic Diseases Project. She was identified as a carrier of Familial Dysautonomia. After 25 years of unanswered medical questions, her brother’s medical concerns now made sense. Genetic testing confirmed he had FD. With this genetic information, his life challenges could be addressed. Appropriate medications and life style changes have radically changed his approach to life.
It has often been said that knowledge is power. Twenty-five years ago the knowledge didn’t exist. Today it does and has made all the difference. Genetic testing is readily available and can provide essential information.
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