As the Jewish Genetics Diseases Center of Greater Phoenix prepares for a community screening in Scottsdale on Aug. 19, Wendy Carriere, executive director of the center, still feels the presence of late co-founder Dr. Sherman Minkoff in every decision she makes.
“I always think, ‘Would Sherman have been proud of this?’ ” Carriere said. “Because he really wanted to see the young Jewish community come together and care about their health and the health of their offspring.”
Minkoff, who died in March at age 82, left a resounding influence on the development and accessibility of genetic screening. In 2000, he and his wife, Andi, founded the Jewish Genetic Diseases Project, which later became JGDC. He served as president of the JGDC in order to help educate the Jewish community on potential genetic diseases based on their ethnic group.
For example, Jewish individuals of Eastern European heritage (Ashkenazi) are susceptible to diseases such as Tay-Sachs disease, cystic fibrosis, Canavan disease, as well as others.
Carriere explained that they were only able to identify four diseases when they started the screenings. Now they can identify more than 100.
“[Minkoff] was instrumental in guiding the center toward using new, more user-friendly methods of screening,” Carriere said. “We were very careful that as we were making changes and keeping up with medical advances, we would not give up on the center’s hallmark of providing one-on-one genetic counseling for all participants, as well as providing an educational component that really informs the participant about the scientific process of genetic testing.”
The center’s upcoming screening will be held at the Valley of the Sun JCC and is for Jewish adults and their partners ages 18-45.
Past screening participants Andrew and Rachel Gibbs were adamant about testing in order to better prepare themselves as parents.
“I am so grateful I’ve had the opportunity to be tested with the extended panel,” he said. “Now that we’re parents, Rachel and I are even more appreciative that we had access to the staff and genetic counselors offering their services.”
The JGDC hosts multiple screenings per year, however, they are constantly working to adapt in order to encompass as many individuals looking for testing.
“We have also gone mobile to ensure genetic testing to the Jewish community in Arizona is not limited by geography,” Carriere said.
The center’s goal remains to fulfill Minkoff ’s vision of educating individuals about the risks of genetic diseases.
With the advancements of technology and the adaptability of the JGDC, it’s never been easier to get a screening.
“We’ve actually adjusted [the screening] multiple times, so that way our community members want to get screened and know how easy it is,” said Yael Domb, director of outreach for the center. “So we give them the option of coming in or even doing it over the phone.”
Domb described the rest of the screening process, which includes a four-minute animation describing what potential diseases and mutations the screening detects. Members of the community are welcome to ask a genetic counselor questions. After that, they provide a saliva sample and it will be mailed for them by the JGDC, or they may take the genetic kits home and mail it themselves.
Sandy and Seymour Rife vouched for the benefits of the genetic testing and the work done by the JGDC.
Because of their contributions to the center, the two are members of JGDC’s Legacy Gene Pool.
“The more genetic testing is done of Jewish individuals, the closer we will get to achieving the center’s vision,” the Rifes said in a joint statement. “We feel strongly that our legacy should help to ensure the continuing work of the center and the vital services it provides for our Jewish community and for current and future generations.” JN
The Jewish Genetics Diseases Center of Greater Phoenix’s upcoming screening will be held at the Valley of the Sun JCC on Sunday, Aug. 19 between 10 a.m. and 1 p.m. Walk in or pre-register for faster service at jewishgeneticsphx.org.