Community Activities

The Department values authentic community engagement to improve representation, access, and diversity in clinical care and research.

Learning from Community Engagement Luminaries: We have learned from Community Engagement Luminaries who have offered us the following quotes:

• “Connection before content.”  R. Bernard Coley, JD, MBA, Co-Chair, SIG Steering Committee, Learning Institute - Black Diaspora.
• “Progress moves at the speed of trust.” Dr. Olajide Williams, MD, MS, Professor and Chief of Staff of the Department of Neurology at the Columbia University Vagelos College of Physicians and Surgeons.
• “People may forget what you said and did, but they will never forget how they were treated.” Martha Hope, Founder of Senior Expressions Inc., Rochester Community Leader, Monroe County Case Manager Supervisor, Host of Real Talk radio show.
• “We ordinary people, once engaged, can be quite extraordinary.” Phyllis Jackson, RN, Executive Director of the Interdenominational Health Ministry and Community Wellness Project Manager at Common Ground Health.

From these inspirations, we have developed a model of community engagement, “Shining our Light” (Figure) based on trusting relationships, empowered community, health literacy, pipeline of diverse healthcare professionals, and reduced disparities. We have broadened methods to improve representation in the following ways:

Hiring a Community Engagement Specialist: In November 2019, Mr. Charles White was hired as the Department of Neurology’s Community Engagement Specialist (the University’s first such position). Mr. White is a Rochesterian with multiple sclerosis, and a citizen-researcher who completed UR’s training program in Engaging Community-Dwelling Older Adults as Health Researchers, during which he obtained a Human Subjects Training Certification from the Collaborative Institutional Training Initiative. Mr. White was also appointed as a UR Research Subject Review Board member and serves as a community “connector” for our Department. He provides guidance to promote our efforts for bi-directional dialogue with our community.

Community-Based Brain Health Workshop Program: Department team members (Christine Annis, CCRC and Charles White) and Katherine Webster, NP received a Community Health Mini-Grant through our UR-CTSI for a Community-Based Brain Health Workshop Program, with matching funds provided by the Department of Neurology. This pilot program combines community brain health needs assessment, goal setting, education, and small group discussion to improve neurologic health literacy and self-efficacy among members of marginalized communities in Rochester. We have partnered with Interdenominational Health Ministry Coalition and Foodlink to formulate sustainable strategies to meet community members’ brain health goals on their own terms. Participants leading this program (Christine Zizzi, MPA, Heidi Schwarz, MD, Christine Annis, CCRC, Charles White, Katie Webster, NP,) gave Neurology Grand Rounds on May 26, 2023, and the program is being continued by support through Accountable Health Partners.

Local Radio Engagement: Mr. White connected the Department with local radio host, Martha Hope, whose weekly show, Real Talk, on Rochester Free Radio 106.3 FM WRFZ, disseminates information to the community. Department team members participated in five Real Talk shows to promote education about neurological diseases and research opportunities.

UR Medicine Spanish Language Neurology Clinic: In addition, in 2020, Dr. Blanca Valdovinos, Associate Chair of DEIJ, established the UR Medicine Spanish Language Neurology Clinic to improve access to quality neurologic care and opportunities to the Latinx community in Rochester. It provides both specialty care in movement disorders and general neurologic care. The clinic hopes to link patient care, teaching, community engagement, and research.

Manhattan Square Neurology Clinic: Dr. Anthony Maroldo opened a general neurology clinic in downtown Rochester to provide more direct and accessible care to our community.