Out And About With UsAgainstAlzheimer’s In August 2017: Uniting Communities For A Cure

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September 1, 2017 - Elizabeth Plant
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Our team was busy in August, continuing to press for greater urgency from government, industry, and the scientific community and bringing people together in the quest for an Alzheimer’s cure.

If you missed the previous posts, check out what we were up to in June and July.

Kansas City

Jason Resendez, who leads LatinosAgainstAlzheimer’s, held a two-day Alzheimer’s capacity building training for community health workers and direct service providers that included a tour of the cutting edge University of Kansas Alzheimer’s Disease Center and the powerful testimony of Daisy Duarte, an UsAgainstAlzheimer’s advocate, Missouri resident and Alzheimer’s clinical trial participant.

Read Jason’s reflections from this experience.

Kansas University Alzheimer’s Disease Center (KU ADC) was also featured on WDAF-TV in Kansas City for its ongoing memory studies. This segment focuses on local research participant, Barbara Walker who wants to increase awareness of clinical trials. Barbara’s husband, Harvey, was just 56 when he was diagnosed with Alzheimer’s and he passed away from complications of Alzheimer’s in 2003. Dr. Jeffrey Burns, co-director at the KU ADC, also highlights the importance of needing a diverse group of participants to make the research as robust as possible. Watch the clip here. This is with support from an initiative of GAP, MemoryStrings, which is a community-based novel recruitment model to engage trial candidates and connect them to local research sites, which is significantly accelerating trial recruitment and increasing the participation of underrepresented populations in research.

Providence, RI

Sponsored by AfricanAmericansAgainstAlzheimer’s and the Global Alzheimer’s Platform, the Forget Me Not play aims to increase Alzheimer’s awareness in African American communities.

Charleston, SC

George Vradenburg met with Dr. Jacobo Mintzer of The Roper St. Francis Research and Innovation Center to discuss the GAP Network.

Atlanta, GA

Jason Resendez was in Atlanta for a meeting of Google's Next Generation Policy Leaders to explore ways to leverage tech and big data to address social justice issues and health disparities.

Silver Spring, Maryland

At the National Hispanic Council on Aging Town Hall, Jason Resendez discussed our work, partially supported by the Patient-Centered Outcomes Research Institute (PCORI), to bring researchers, care partners, community leaders and advocates together to advance our understanding and ability to address the impact of Alzheimer's on communities of color through patient-centered research and programming. You can watch his remarks here.

News & Media

In early August, music icon Glen Campbell passed away at age 81 after a courageous public battle with Alzheimer’s. UsAgainstAlzheimer’s, which has stood together with Glen, Kim and their children to confront this disease and forge a path to a cure, mourns his tragic loss and offers sincerest condolences to surviving family members and friends. Read our press statement.

Glen’s passing has resonated deeply with our community. In a recent email, we asked you to sign a card for Kim and her family, and we were inspired that more than 2,000 of you sent messages of support.

In a moving op-ed, UsAgainstAlzheimer’s board member, Greg O’Brien shares how Glen Campbell’s brave battle with Alzheimer’s inspired him in his own fight against the disease.

Distrust based on historical research abuses has contributed to African Americans being hesitant about participating in medical research, both while alive and donating after death. Stephanie Monroe, Director of AfricanAmericansAgainstAlzheimer’s, and other experts talk to CNN about why African Americans are less likely to participate in research and how to close the gap.

Latinos are disproportionately impacted by Alzheimer’s – but too often they don’t get the support and care they need. Jason Resendez, Executive Director of LatinosAgainstAlzheimer’s, has a post on Diverse Elders that highlights our partnership with Alzheimer’s Greater Los Angeles to develop culturally tailored outreach to empower Latinos families touched by Alzheimer’s.

About the Author

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Elizabeth Plant

Elizabeth is the former manager of the Alzheimer's Talks teleconference series, having coordinated electronic actions associated with our mobilization campaign. Elizabeth has held senior positions at education non-profits in the District of Columbia. She served as Deputy Director of DC Children First and previously was the Senior Director, Program, Legislative Affairs and Education Policy of the Washington Scholarship Fund (WSF).