When my daughter was 2 years old, we found out that she has a rare Jewish genetic disorder called Gaucher Disease. Of course we immediately went to the web for information – and freaked! Fortunately, we got a crash course in genetic diseases, and with the help of Genzyme, we found an enzyme replacement therapy or treatment. I’m very happy to say that she (and we) are just fine.
It turns out that we have a variety of unusual genes in our Ashkenazi backgrounds. The data says that one in five of us is a carrier for at least one of 18 preventable genetic diseases! Oye. Although it’s often scary at the start, it’s better to know and to figure it out pro-actively than to be surprised – like we were.
On Wednesday April 13, Dr Jodi Hoffman from Tufts will be at Temple Beth Elohim in Wellesley from 7:30-8:30 PM to teach us about Jewish genetic diseases, and what we can do to protect ourselves and our future children and grandchildren. I listened to Dr Hoffman last Sunday, and wished I had heard this talk years ago.
If you are planning to have children, more children and / or grandchildren, I urge you to stop by, to meet Dr. Hoffman and to get your questions answered. Find out how you can obtain a preconception screening (with and without insurance coverage). Find out what are the options for carrier couples to have healthy babies. Find out how to sign up for the Temple Beth Elohim Jewish Genetic Disease Community Screening, Wednesday May 11th 3:00-9:00pm.
If you can’t make it, you can also sign up directly at www.victorcenters.org/screening for registration and information on financial aid.