Originally published: March 29, 2020
New Pittsburgh Courier

These monthly pages focus on health disparities in the Pittsburgh region. They educate readers about key health issues and inform them about research opportunities and community resources. All articles can be accessed online at the New Pittsburgh Courier website (newpittsburghcourier.com). The monthly series is a partnership of the New Pittsburgh Courier, Community PARTners (a core service of the University of Pittsburgh’s Clinical and Translational Science Institute—CTSI), the Urban League of Greater Pittsburgh and the UPMC Center for Engagement and Inclusion.

This month, the “Take Charge of Your Health Today” page focuses on dispelling the many myths about Down syndrome. We will also share the range of resources available here in Allegheny County. Erricka Hager and Bee Schindler, community engagement coordinators, CTSI, and Esther L. Bush, president and CEO of the Urban League of Greater Pittsburgh, spoke about this topic.

BS: Good afternoon, Ms. Bush. It’s been a while since we last discussed Down syndrome. This month we connected with Annie Cohen, PhD, associate professor of psychiatry and associate director of the Alzheimer’s Disease Research Center’s Neuroimaging Core. Dr. Cohen shared that her team is assembling focus groups in the Down syndrome community.

EH: Yes, Bee. It was great to connect with Dr. Cohen again to talk about Down syndrome. These focus groups will allow individuals with Down syndrome, their family members and caregivers and other community stakeholders the opportunity to voice their opinions about and share their experiences with research.

EB: Wow—it sounds like Dr. Cohen is continuing to do great work in the Pittsburgh community. This is the perfect time for us to raise awareness about Down syndrome. World Down Syndrome Day happens each year on March 21. I’m glad we’re helping our readers learn more about Down syndrome and how it can affect their loved ones. What are some ways we can encourage our readers to talk about Down syndrome?

BS: I would suggest that our readers review the Down syndrome myths that were shared in the overview. Dr. Cohen did a great job of dispelling a few of the misconceptions that are related to Down syndrome. It’s important that we boost community outreach and awareness to highlight Down syndrome community assets and real-life barriers.

EB: I second that, Bee! Our readers would benefit from reviewing the resources that are listed on this page. I would also encourage them to review the studies that are listed on the Pitt+Me website (pittplusme.org). Their voices are valuable. Researchers need to hear their thoughts and opinions. Participating in Dr. Cohen’s focus group is a great way to provide feedback about ways to improve the research experience.

EH: Dr. Cohen also does a great job of making research a two-way street. She understands that in order for people to open up to her, she has to open up to them. Thank you for having this conversation with us, Ms. Bush. April’s page will explore how financial issues can affect our parenting skills. I look forward to hearing your thoughts about this topic.