University of Wisconsin–Madison

Tag: advocacy

Advocating for All: The Impact of Community and Equity in Dementia Research

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Dementia Matters Special Series: Voices of Research Participants

What do you do when dementia symptoms begin to upend your entire life? For Brother John-Richard Pagan, the answer was to persist in finding a diagnosis and a supportive community that aligned with his values. In this episode of our Voices of Research Participants series with co-host Sarah Walter, MSc, Br John-Richard describes how he went from a PhD student to a dementia research participant and his journey getting diagnosed with Lewy body dementia (LBD). Br John-Richard also discusses how his background in clinical psychology influenced his participation in research and his advocacy for disabled, LGBTQ+ and other marginalized community members in medical research.

Guest: Br John-Richard Pagan, MS, veteran, monastic, Episcopal Ecumenical Community, advocate, Lewy Body Dementia Association (LBDA)

Co-host: Sarah Walter, MSc, program administrator, Alzheimer’s Clinical Trials Consortium (ACTC) and Alzheimer’s Therapeutic Research Institute (ATRI)

The Road to Hope: Philanthropy’s Impact on Alzheimer’s Research

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In this year-end episode of Dementia Matters, we explore the vital role of philanthropy in advancing Alzheimer’s disease research and care. Mr. Dave Adam serves on the board of visitors for the UW Initiative to End Alzheimer’s (IEA) and is an avid long-distance biker. In this episode, Adam shares his journey of combining his passions for biking and Alzheimer’s advocacy. With personal experiences touched by dementia, Dave discusses how he used his solo biking expeditions across Canada and Australia to raise awareness and funds to support prevention and treatment strategies, improve care and benefit researchers at the University of Wisconsin–Madison seeking a cure for Alzheimer’s disease.

Guest: Dave Adam, board of visitors, UW Initiative to End Alzheimer’s (IEA)

Dementia Caregiver Turns Advocate for People with Alzheimer’s Disease

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Former Badger Men’s Hockey announcer and “The Golf Affect Radio Show” host Paul Braun was a caregiver for his late wife, Karen, who had early-onset Alzheimer’s disease. Paul’s experiences motivated him to become an advocate for people with Alzheimer’s disease and raise awareness and money for research and caregiver support. Paul was instrumental in developing the American Family Insurance Championship golf tournament Birdies for Health campaign, which raises money for five health causes at UW Health.

Guest: Paul Braun, radio and sports broadcasting personality