A few weekends ago, I traveled with two other leaders of the Program for Jewish Genetic Health (PJGH) to Pittsburgh, where we were scholars-in-residence for the “Mikey Butler Yahrzeit (memorial) Weekend.” Mikey Butler succumbed to cystic fibrosis and complications of its treatments when he was 24 years old. His parents, Nina and Danny, wanted to organize an event in his memory on the 10th anniversary of his death. Being that Mikey loved his alma mater Yeshiva University, and being that he was “into” genetic testing and technology, having PJGH speakers for this weekend made a lot of sense. On top of this, we ourselves had experience in “distant Jewish community-based genetics weekends,” as we had a great visit to the Memphis Jewish community in December of 2012.
Mikey’s mom, Nina, mobilized a large segment of Pittsburgh’s Jewish community for the events of the weekend—from doctors to high school students, from grad students to synagogue members and friends. We gave talks on the myths associated with Jewish genetics, on the future of genetic testing, on the issues of stigma and disclosure as they relate to health, etc. We heard really nice feedback—things like, “we came because the Butlers are our friends, we didn’t realize the field is so fascinating” and “you left the whole community buzzing.” And the Pittsburgh folks are already starting to reach out to the PJGH: a college student whose mom attended a talk called for career advice, a community educator asked for access to our educational videos. It is estimated that we spoke to around 600-700 people over the weekend—that’s a lot of awareness and teaching over a really short time frame.
But, on the topic of teaching, I myself learned a lot that weekend too.
First, is what I learned from the Butlers. I learned what it takes to mobilize a community—and I don’t just mean to get sufficient audience members into the room for an event. There were countless organizations and multiple synagogues involved as sponsors for each and every session—all banded together for this, all of their differences put aside for this. I also thank the Butlers for teaching me what an “open home” really looks like, for teaching me about family dynamics, for teaching me how one communicates about a child after the loss of that child, and more.
Second, is what I learned about myself—and actually it was Danny Butler who pointed this out to me. By training I am a molecular biologist, but now primarily I am involved with education/outreach in the field of Jewish genetics. But, in any of these capacities, when I think about the actual science, I do so through a lens of my Jewish beliefs. I am simply awed by God’s creations, and this is especially marked when I am observing these creations at the level of the genome.
I am definitely going back to Pittsburgh.