As someone who has lost two daughters to familial dysautonomia, Lois Victor knows all too well the pain that can be wrought by genetic disease.
But rather than wallow in her suffering, Victor decided to take action. She has been the driving force behind two major new centers specializing in Jewish genetic diseases, and by year’s end she hopes to open her third eponymous Victor Center in Florida — all with an eye toward fostering awareness and offering affordable opportunities for testing.
“I started the Victor Center because I was looking for a way to spare others what we went through,” she told the Forward. Experience has allowed Victor to address the issues surrounding both genetic disease and testing with a rare brand of urgency. “I think that speaking as a parent puts a very heavy weight on people and makes them aware really quickly as to what can happen,” she said.
Though diseases like familial dysautonomia are genetically transmitted, it’s common for family members to be unaware that they are carriers. This was the case when Victor had her first child in the 1960s. Her first daughter wasn’t diagnosed until she was 3, but by the time she was 1, Victor’s doctor suggested that Victor get pregnant again soon, as her first child would not live beyond the age of 5.
Victor recalled the uncertainty involved in having ill children. “We missed an awful lot of parties and family outings,” she said. “It was very difficult to travel with either of them or to predict the next time they were going to be sick.”
Knowing now that one in four Ashkenazic Jews is a carrier for at least one Jewish genetic disease, Victor has become a leading proponent of early screening. Numbers like these may sound high, she said, but the diseases can be prevented with a simple blood test.
Victor established her first center at the Albert Einstein Medical Center in Philadelphia five years ago. The second opened at the Tufts-New England Medical Center in 2005.
Victor’s approach in establishing her centers has been not to build new facilities from scratch but rather to partner with existing institutions that have complementary goals. “This way, all the philanthropic dollars can be spent on the program itself and testing,” she said.
The same formula will be in place at the newest Victor Center, which will be housed at the Miller School of Medicine at the University of Miami. The center will offer genetic screening and counseling, as well as educational workshops for individuals and organizations interested in learning more about the most common Jewish genetic diseases. The new center will also target many of the colleges and universities located in Florida, as well as Jewish community centers, to help spread awareness and potentially help other institutions host screenings of their own.
“Although people think of Florida as being full of retirees, it is a very young state, so both [younger and older] populations will be our target,” Victor said.
Victor has made testing on college campuses a priority. In just the past few years, the number of students tested on campus has increased tenfold, thanks to Victor Center efforts.
For Victor, the question of whether or not to test is a no-brainer. Her dream is to see all Jews of marriageable age tested, and she is prepared to found more regional centers to help make it a reality.
Asked if she is pleased with the progress she’s made so far, Victor said she is far from content. “Ask me in five years, when there are no births with any of these diseases,” she said.
This story "Philanthropist Puts Genetic Diseases to The Test" was written by Erin McKigney.