Lois B. Victor didn’t envision becoming a health activist. She was drawn into it after losing two daughters to a genetic disease prevalent among Ashkenazi Jews.
“Back in the 1960s when I had my children, there was no testing or any way for us to know until after our children were born if we carried a gene that caused one of these fatal diseases,” says Ms. Victor. “Today, we have the tools and the tests that can prevent people from having to go through that experience. My goal is to make sure that all Jews of child-bearing age be tested and get the information they need to have healthy children.” Having lost an eight-year old daughter, and after her second daughter succumbed at the age of 35, Ms. Victor wanted nothing more to do with genetic diseases. “I had to live with the impact of those diseases for most of my adult life and I wanted nothing more to do with them,” she explains. “I still don’t.”
But then a friend introduced her to the staff at Einstein Healthcare Network who were leading the way in testing for Jewish genetic diseases and she was intrigued. “I wasn’t immediately drawn to genetics as a philanthropic interest but there had been so many advances and Einstein was way out in front.” Ms. Victor worked closely with Einstein staff and administration in establishing the Victor Center for Jewish Genetic Diseases in 2002 to promote awareness, education and prevention of Ashkenazi Jewish genetic diseases. Since then, Einstein has held numerous outreach and screening programs on college campuses and has partnered with organizations such as Hillel, Hadassah, and Jewish Family & Children Services to raise awareness in the Jewish community. In conjunction with United Jewish Communities (UJC), the Victor Center screened 150 young adults at the General Assembly held in November 2007. Einstein’s Victor Center model has been so successful that in 2005, a Victor Program was launched at the Tufts Medical Center and Floating Hospital for Children in Boston and this year, a Victor Center was opened at the University of Miami Miller School of Medicine.
“The vision for the future of the Victor Centers is that they become the gold standard for testing uniformity, affordability and sustainability, says Ms. Victor. “Most of these diseases are fatal but they can be prevented.” Ms. Victor repeats, “They CAN be prevented. This is the message people have to hear. There is no need for anyone to experience the pain of losing a child to a Jewish genetic disease. Even people who carry the genes can have healthy babies . . . if they know they are carriers in advance.” Committed to getting the word out to rabbis, the medical community and young adults that with testing and up-to-date information, these diseases are preventable, Ms. Victor often steps out onto the front lines to make sure the message is heard.
In addition to being a staunch advocate and participating in many of the activities of the three Victor Center programs, she also spends time online talking to people who can help draw attention to the importance of genetic testing. She does not dwell on her own personal losses, but shares her story when called on to speak to medical associations, Jewish organizations and other interested groups. With a focus on prevention, Ms. Victor emphasizes, “My mantra is one blood test, one time for one minute. That’s all it takes to ensure your children are free of these diseases. My wish is that no other parent experience the unnecessary loss of a child and my goal is to make sure that these diseases are gone in my lifetime.”
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