Victor Center for the Prevention of Jewish Genetic Diseases Genetic counseling and screenings

2. Victor Center for the Prevention of Jewish Genetic Diseases Genetic counseling and screenings Awareness building Community programs

3. The Gold Standard of Screening Genetic Counseling Laboratories Panel of Tests

4. Target Markets: Healthcare Professionals Clergy Target Population Community At-Large

5. Healthcare Professionals Standard of care Advisory group Healthcare outreach

6. Clergy Holiday Outreach And Education Young Couples Pre Wedding Counseling Rabbinic Training Clergy Conferences Advisory Group

7. Community Partnerships

8. Target Population: 18 to 45 Barriers of Mindset & Cost

9. College Campus Campaign

10. Why College Students? Predictable behavior Limited concerns of access, time, children Large proportion attending college Most cost effective Preconception

11. Objectives Raise awareness of JGDs Identify current level of awareness Gauge knowledge of the Victor Center Test concepts and preliminary materials

12. Creating an EvidenceBased Campaign Background information In-depth interviews Web-based surveys

13. Phone Interviews 10 conducted Staff and Student Leaders $40 incentive All reached 1/3 to ½ of Jewish Students on Campus

14. Online Surveys

16. Findings: Baseline Knowledge Varied knowledge of Jewish genetic diseases Awareness of “carrier” Low awareness of resources “The average undergrad, [their knowledge of JGD] is pretty poor…They aren’t aware of the prevalence… They probably just think of Cystic Fibrosis… and Tay-Sachs, and that’s about it.” -FSU Representative

17. Questions Asked By Participants What are the diseases? (4 mentions) What does it cost to get screened? (3 mentions) What if you are not Ashkenazi? (3 mentions) How is screening conducted (more than just a blood test)? (2 mentions) What does it mean for me if I’m a carrier? (2 mentions)

19. “I love this one. It’s my favorite. I think the images of the five students represent the entire campus. It’s not a picture of an ultra orthodox Jew or a Jewish person who doesn’t look anything like me. It looks like typical students in college campuses. I love that the 1 in 5 and the Jewish Genetic Diseases is very visible. This one is the one that I would use.” – Florida State University Representative

20. “Learn the Facts, Protect your Future” Tagline “The idea of protecting your future, there is just something that’s a little weird to me about that to me… something that’s a little overstated about that… This is information you need for your future, and it can help you make decisions—but it’s really not protecting your future.” – University of California, Berkeley Representative

22. Modifications Assess term “Ashkenazi Jew” Revise Tagline “Learn the Facts, Protect your Future” Make materials available online Create magnet or sticker

24. VC Brochure VC Factsheet VC Magnet VC Poster

25. Campus Leaders • Barnard/Columbia (NYC) • Drexel University (Philadelphia) • Emory University (Atlanta) • University of Maryland (Baltimore / D.C.) • University of California Santa Barbara • Northwestern University - identified through the Chicago Center for Jewish genetic disorders

26. Data collected from three sources: • Tracking Worksheets • Student Awareness Survey • The Campus Coordinator Interviews

27. Survey Findings- Awareness Overall increased awareness on campus 71% reporting information gave them a deeper understanding of their risk. 86% reported hearing or seeing JGDs on campus 73% reported hearing “1 in 5” is a carrier 61% reported hearing screening is important 48% reported hearing carriers are healthy 42% reported hearing preconception screening is key n=90, 56%female, average age 20.4

28. Survey Findings- Attitude 54% reported knowing they should be screened prior to reading materials 64% reported they realized they might be a carrier after reading or hearing about JGD 78% reported they will consider being screened at some point 63% reported they actually plan to be screened n=90, 56%female, average age 20.4

29. Survey Findings- Recommendations Dissemination of Materials: 44% campus event 10% campus posting Placement of Materials 81% Hillel 64% Health Services 63% Campus Event n=90, 56%female, average age 20.4

30. Significant Findings- Campus Interviews Campus partners are crucial $250 insufficient incentive Stigmatization (“Jews are diseased”) Conventional Media Ineffective Campuses all unique Fatigue Frustration from Materials being Removed Budget for Events

31. Suggestions for Future Campaigns Enlist MPH students Awareness-attitude-action continuum Consider motivation Alternate strategy for distribution tracking Omit and conventional print materials radio Use spokespeople Power of prevention

32. Most Significant Weakness:

33. Promotion of Facebook Page Advertisements across 80 social media sites 2,225,585 Impressions Click-Through-Rate .09% (industry average .05%)

34. Recommendations Created engaging and informative content creates increase in activity. An status update inspired heartfelt comment and increased our traffic to 94 active daily users Keep soliciting feedback, continue to post relevant content to maintain fan base.

36. Thank you! Debby Hirshman debby@victorcenters.org Shoshana Rosen rosensh@einstein.edu www.victorcenters.org