Julie Kristof’s life changed drastically when in 2008 her 18-month old daughter Miriam was diagnosed with a rare genetic disorder called Familial Dysautonomia. She quickly learned that this condition occurs only among the Jewish population who descend from Eastern or Central Europe.
Both she and her husband are carriers of this genetic mutation and with each pregnancy there was a one-in-four chance that the baby would be affected. The sad part is that Julie and her husband could have been tested but were never told to do so. And, Julie was tested for Tay Sachs in high school so thought she was “safe.”
Like many communities who are descendants of very homogeneous groups, the Jewish community has a higher propensity for a number of genetic conditions that potentially impacts children of a carrier couple or the person who inherits the faulty gene. Individuals of Ashkenazi Jewish (AJ) ancestry have a 10x higher frequency of BRCA mutations than the general population. In the case of Familial Dysautonomia, 1-in-32 Ashkenazi Jews are carriers and it is not carried by anyone outside the community. There is a long list of hereditary conditions including cancers that are more likely to impact Jews who hail from Eastern Europe, Morocco or the Middle East.
Fast forward to the fall of 2018, Julie went on a trip to Israel called Momentum with a group of women from her son’s high school (JPPS-Bialik) along with hundreds of women from around the world. Julie has been heading up an organization call the Montreal Jewish Genetic Disorder fund for a number of years and has done many presentations on her experience and her daughter’s condition. What she didn’t expect is how many questions the women on the trip had about their own genetic health – how Jewish genetic health is unique? How can one know if they’re a carrier?
How to talk to their children about hereditary disease? What options there are for testing? How should they decide whether to get tested? Are direct-to-consumer tests good options? Etc.
Upon returning to Montreal, this group of mothers decided that the community should have the opportunity to get some guidance and answers to their questions. The educators at JPPS-Bialik also saw this as a perfect fit with their mission to educate.
As Kristof pointed out, “There are so many things that are outside our control when it comes to our health. In the case of many of these genetic conditions, an individual can gather information for themselves and their families that can help them make decisions about their health. Information is power. Why roll the dice?” She continued, “I wish I had asked more questions. I wish I had known… I feel guilty every day that my daughter suffers the way she does.”
On Monday, November 18 (7 pm), a panel of experts will address a range of questions about Jewish genetic health – medical, Jewish law (hallacha), privacy and the impact on the lives of those affected at free lecture to be held at Bialik High School (6500 Kildare Road) in Côte Saint-Luc. Suppliers of services related to genetic testing or fertility will also be present to provide information.
The panelists are:
Dr. David Rosenblatt: Professor, Department of Human Genetics, Faculty of Medicine, McGill University
Rabbi Avi Finegold: Founder, Jewish Learning Lab
Eta Yudin, Vice-President, Quebec, CIJA
Joanne Miller-Eisman, Founder, Hereditary Breast and Ovarian Cancer Foundation
Julie Kristof will be the moderator.
RSVP to the event on the event Facebook page (“Why roll
the dice? What’s hidden in your Jewish genes”) or at firstname.lastname@example.org