The Pittsburgh Jewish community is chock-full of doctors and medical researchers, but two women (with the support of many other volunteers and communal organizations) are showing that caring for the health and well-being of our community isn’t just for the professionals.
Beginning on Friday morning, Jan. 31, and ending on Sunday afternoon Feb. 2, the Mikey Butler Yarzheit Weekend, dedicated to Jewish genetic health and awareness, will be taking place at different venues and involving a wide variety of Jewish Pittsburghers. And we have two women especially to thank for this effort — Nina, the mother of the late Mickey Butler, and her friend and Jewish-genetics-awareness warrior Dodie Roskies.
Butler and Roskies (my cousin) have come together — one from tragedy and one in order to solve a problem — to create a weekend of programming devoted to telling all members of our community, the vast majority of whom are of Eastern-European descent (Ashkenazi), that young people must get to know our shared, unique genetic profile in order to make informed decisions and promote the health and well-being of the coming generations.
As Butler explained it to me, the weekend is a means of “channeling our [family’s] grief in [a] constructive, positive direction.” And so they are. Mikey died 10 years ago at the age of 24 from cystic fibrosis, which is among the 19 different genetic diseases for which Jews of Ashkenazi descent are at risk. But rather than dwell on their loss, the family created a foundation in their son’s name and are committed to raising awareness about Jewish genetics in order to help individuals make informed decisions.
“We are living in a time of such amazing technological development and we can know so much,” says Nina, that we should “take advantage” of the testing and screening that’s available and get educated.
Roskies originally came at the issue from a more practical perspective. Most insurance companies were paying for testing once a woman had become pregnant, which Roskies thought was too late. Roskies was looking for a way to encourage earlier screening and to prove to insurance companies that it was in their interest to cover the cost of preconception testing since it can cost hundreds of thousands a year to treat these illnesses. She enlisted the help of local insurer Highmark to partially underwrite her research and for the past three years she has organized screenings for college students.
The response has been tremendous. Highmark has agreed to cover preconception testing and hundreds of young Jews have been given a key to their past (since these conditions are a link to their shared history with previous generations of Jews) and their future (children).
Now Butler and Roskies are pooling their efforts and passion to the local Jewish community, through the Yarzheit weekend. Every session is geared to different audiences including local Jewish high-schoolers, young professionals and grad students as well as young couples. The point is to reach as many people as possible with the message about the importance of learning what’s in your genes so when it comes times to have children, these Jews can make an informed decision.
The health and well-being of the Jewish community is as paramount to the organizers of this event as it is among the institutions supporting the weekend, such as the Victor Center for Jewish Genetic Diseases, the Jewish Healthcare Foundation and others. But learning about your genetic profile for the purpose of making informed decisions about procreating isn’t the only reason for wider dissemination of information related to Jewish genetics.
The other reason is peoplehood. In an age when fewer American Jews than ever identify with the major denominations and an ever greater number see themselves as Jewish “without religion,” genetics is a vehicle for promoting the interconnection between all Jews, whether literate or not and whether affiliated or not. Being Jewish is literally running in our veins and if that isn’t the basis for feeling linked to your fellow Jews, there isn’t much else as basic as biology.
(Abby W. Schachter, who lives in Pittsburgh, is a senior fellow at the Independent Women’s Forum and blogs about the intersection of government policy and parenting at captainmommy.com. Her opinions do not necessarily represent those of the Chronicle.)