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.
Most of my Sundays involve errands, and then some dedicated time to relaxing and recharging before the upcoming week. This past Sunday I spent ~8 hours at a screening event that we ran at YU, open to Yeshiva College and Stern College students and alumni, and community members in Washington Heights. Registration opened ~3 weeks ago, and we were almost at capacity within days. We ended up screening ~140 individuals (not too shabby if you ask me!).
Screening events such as this one are really great, but also very challenging. They are great because it enables a large audience to benefit and pursue carrier screening in a convenient and centralized location. Screening events are challenging because of all the planning, coordination, and logistics which are involved in counseling and testing literally hundreds of people at a time.
One of the things which made this event run so smoothly is a new video we created as a tool to teach people about Jewish carrier screening. We decided to make this short video around the same time that I filmed the video for our new GeneSights lesson about Preconception Carrier Screening. Some of the more amusing parts of the day were all of the “You’re the woman from the video!” comments that I got. You can access the full GeneSights lesson by signing up and signing in here.
Even though it was a very long day, luckily, we had a ton of help! Special thanks to all our physicians, genetic counselors and genetics fellows, volunteers from the YU Medical Ethics Society, volunteer genetic counseling students, and our phlebotomists! (Anna, Ariella, Aryeh, Avi, Barrie, Carol, Chana, Chris, Emily, Jon, Mickey, Pauline, Sam, Sara Malka, Sara Malka [yup there were 2], Shirley, Susan, Tehilla, Temima, Yocheved, and Yosef). We could not have done it without you! A big thanks to Estie Rose, our genetic counselor who organized the event. The day went so smoothly, and in my opinion, was a big success. Now it’s time to wait for the results and begin the never ending process of follow up. Since 1 in 3 Ashkenazi Jews is a carrier for one of the conditions we screen for, I guess we’ll be expecting ~47 carriers from this screening event. That’s a lot of follow up!
If you missed the event but would still like to be screened, check out these great instructions on how!
Welcome back! Summer vacations have come to an end, we’ve passed the Labor Day mark, school is back in session, and we’ve reached the never ending season of Jewish holidays. We’re finally (almost) back to regular swing of things.
Here at the Program for Jewish Genetic Health, we’re also really excited about kicking off the New Year. We recently reflected on some of the projects we’ve been working on, and have realized that we have quite a bit to be proud of!
We’ve been trying to spread information and education about genetics and how it impacts the Jewish community. This past January, Estie wrote an article for the Jewish Press talking about the importance of preconception carrier screening, and just this past August, she wrote another article explaining the importance and utility of genetic counseling. I wrote an article which appeared in the Jewish Press about BRCA related hereditary cancers and the usefulness of genetic testing.
Over the past year, we launched our GeneSights online education platform, as well as three lessons; Genetics 101, Hereditary Breast and Ovarian Cancer (BRCA1 and BRCA1), and Inflammatory Bowel Disease: Crohn’s Disease and Ulcerative Colitis. Our next lesson: Preconception Carrier Screening: Tay Sachs and many other diseases, has already been filmed, and we’re planning to launch it this October or November!
We’ve given numerous in-person talks and educational events in and around the NY area as well as in Memphis, TN, Chicago, IL, and Phoenix, AZ. In addition to community education, we’ve focused on educating Rabbis, community leaders, and healthcare providers about some of these important issues. We have a number of new educational events scheduled and in the works for the upcoming year!
Aside from being able to help coordinate carrier screening at our clinical offices at Montefiore, we’ve also held a community screen this year at Columbia University. Our annual community screen for Stern College, YU, and the Mount Sinai Washington Heights community is coming up soon, and will be on November 10th, 2013 (hope to see you there!).
To me, the fall has always felt like a time of new beginnings. As I child, I loved going back to school, learning new things, and getting a fresh new start. Here at the Program for Jewish Genetic Health we have lots of new and exciting projects in the works. We’re hoping that this upcoming year will be a fantastic one for our PJGH family, and for yours.
(And to get back on my soap-box for one more minute, as I’ve done now on numerous occasions, I’ll remind you to find out more about your family medical history. If you’ll be with family over the holidays, use this opportunity to speak with them and gather this important and potentially lifesaving information!)
If you haven’t already heard, two weeks ago we launched our new free Jewish Genetics online education series, GeneSights. The GeneSights project has been in the works now for at least a year. It started with our vision of educating the entire Jewish community about medical issues which have a Jewish genetic component, and developed as we crafted a mechanism which would get the word out to as many people as possible, in the most effective way possible.
You see, the traditional models of community education, such as in-person lectures, reach a limited number of people; and although these in-person events can be successful, they can also be complicated by an endless amount of scheduling conflicts, weather mishaps, and traffic jams. Additionally, when we run an event in Teaneck, NJ, it doesn’t really help those living in Memphis, TN, or Cleveland, OH , who may have also been interested in the topic and would benefit from the education.
We got our inspiration from the up and coming world of online education, and in our effort to make this education accessible to anyone at any time, GeneSights was born! The GeneSights platform gives users access to webinar presentations by experts in the field about medical issues that have a Jewish genetic component. Most “lessons” have a short public service announcement (PSA) video associated with them, which gives a snapshot of the condition in question, from a patient’s perspective. Additional resources about the condition and links to outside support organizations are housed on the individual lesson’s page as well.
Our first lesson is about Hereditary Breast and Ovarian Cancer. The associated PSA, Sara’s Story, can be seen here. A two-part introductory lesson, Genetics 101, is pre-loaded on the site as well, and our next lesson that already is in production is on Inflammatory Bowel Disease: Crohn’s Disease and Ulcerative Colitis. Future lesson topics will include, Parkinson’s disease, PGD: Preimplantation Genetic Diagnosis, Blood disorders and Bone Marrow Donation, and more! (And yes, we are open to topic suggestions, and would love to hear from you!)
These online lessons are not going to replace our in-person lectures or doctors visits, but we hope that they will help create a rich tapestry of opportunities to become educated about genetics and its impact on your health, and the health of the Jewish community as a whole.
We’re extremely excited to be able to share this resource with the community! Check it out at www.GeneSights.com
Come learn with us!