NOVEMBER 2022

DS-DETERMINED AND THE BUDDY WALK

On Sunday, October 23, members of the PaTH team at the University of Pittsburgh attended the Buddy Walk, an event organized by the Down Syndrome Association of Pittsburgh. It was a beautiful day in a local park complete with activities, performers, food trucks, and a one-mile walk. This year was the 28th Buddy Walk, and for nearly three decades, it has consistently been the largest fundraiser for people with Down syndrome in the Greater Pittsburgh Area.

In addition to fundraising for the community, the Pittsburgh PaTH team participated in this event to support an active PCORnet® study. The DS-Determined Study links PCORnet data to the Down Syndrome resources of the nation-wide DS-CONNECT registry. Study goals include (1) increasing DS-CONNECT registry enrollment, (2) systematic extraction of clinical observations, treatments, and outcomes from PCORnet for DS-CONNECT participants, and (3) conducting cognitive assessment via DS-CONNECT in the PCORnet population. Through the DS Determined study, we hope to better understand relationships between health and community for people with Down syndrome, making this study one of the first of its kind.

Pitt’s PaTH team felt privileged to participate in the Buddy Walk, an inspiring community event, sharing information about the DS-CONNECT study as well as the MyPaTH Story Booth initiative. As noted by a clinical coordinator, Heather Shiwarski:

"The Pittsburgh Buddy Walk is a fundraiser to support the local Down Syndrome Association initiatives, including the Down Syndrome Center of Western Pennsylvania, but at its heart, the Buddy Walk is so much more than just an event to raise money. Often referred to as a 'family reunion,' the Buddy Walk is a time for people with Down syndrome, and those that love them, to come together and celebrate all the unique abilities, gifts, and joy that individuals with Down syndrome bring to into our lives and into our communities every day. Spreading awareness in a one-mile fun walk is just one part of the day’s events; there are also dancing, self-advocacy and advocacy tents, food, friendship, and family. Did I mention dancing? There is sure to always be an epic dance party happening in the middle of the festivities. We are so very thankful for the support of the DSA Buddy Walk, which continues to provide funds for the Down Syndrome Center and helps gives us the opportunity to provide comprehensive medical care and support to people with Down syndrome from birth all the way through life."

For more information about DS-Determined, visit the study page on the PaTH website.

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