A new test is available to determine whether someone is a carrier of a genetic disease. The test is very safe and requires only a saliva sample. This method is much cheaper than previous methods, and is extremely convenient – the sample can be sent to the lab via mail.
This important development has been brought to our attention by Marcy Welt, a long time congregant at Midbar Kodesh Temple in Henderson, NV. She wrote the following letter to point our attention to this issue and shared with us a bit of her family’s history with Tay-Sachs Disease, one of the life-threatening diseases that the new test can help prevent.
This month it will be 15 years since my daughter and son-in-law Tiffany (Welt) and Steven Doctors, gave birth to a child with Tay-Sachs Disease and almost 13 years since we lost our Jessica Ann to the Jewish genetic disease. The years that followed our loss were difficult, but made easier by the love and support of those around us, and by those who helped us spread the word that our Jewish population was still at risk.
Since then Tiffany and Steven welcomed Elizabeth, conceived by Pre-implantation Genetic Diagnosis (PGD). She is a very healthy 11 years old, in the 6th grade, and beginning to prepare for her Bat Mitzvah. Their first born, Jordan, who will be 17 years old in December, just began college. He spent a month on a summer intern program at the Technion in Israel. We continue to be blessed by their daily achievements and those of Cory and Tamuna’s children Sandro, now 10 and Anna, now 4 years old, who are living in Reston, Virginia just outside of Washington DC. Tiffany and Steven live near us and just took over the USY and Kadima programs at Midbar Kodesh Temple (Far West Region).
I have been working on a special project at Midbar Kodesh Temple and have learned that so much has been done in the field of Jewish genetics and that Tay-Sachs Disease is no longer the number one fatal Jewish genetic disease. For this, we are grateful, but are astonished to know that there are now 34 Jewish genetic diseases that have been identified within the Ashkenasic and Sephardic populations. Carriers can be identified for these and other genetic diseases by using a very new saliva test that is easier to administer and is less expensive. Out of pocket expenses are not more than $350.00 per person, and often less, if covered by insurance. The old blood draw could cost up to $4000.00 per person, and had to be done at a laboratory. This universal genetic test was developed by Counsyl, https://www.counsyl.com/learn/prevent-genetic-disease/.
This information is important to share with others. A full press release and arrangements to do screenings on campus, at synagogues, or at conventions can be made available to you by contacting Shivani, a genetic counselor with Counsyl at: email@example.com. They often work with the Victor Centers.
(if you want to contact Marcy, please email firstname.lastname@example.org and we will help you get connected.)