The Collective Mind: A CurePSP Podcast

CurePSP

The Collective Mind features conversations with care partners, advocates, physicians, scientists, researchers and staff members who are bringing us closer to a cure for PSP, CBD and MSA. We aim to educate and share the experiences of CurePSP community members, spreading awareness to make living with these diseases a little more manageable. Host: Oscar Sullivan

  1. 4h ago

    Let's Talk About Tau

    If you're part of our community, you've probably heard of tau. But what is this protein actually doing in the brain, and why does it matter so much to researchers? In this episode, we break down the basics of tau before taking you inside this year's Tau Global Conference. We're covering two massive updates from the floor: a potential first-ever diagnostic biomarker, and a Phase 3 trial testing if lowering tau can actually slow these diseases down. Interested in participating in research? Explore our research opportunities here.

    Let's Talk About Tau

  2. Jul 15

    How the Lived Experience Is Shaping Research

    When over five hundred scientists at a conference rose to their feet for two people living with PSP and CBD, many of them had never actually met anyone with the diseases they study. This episode is about what changes when they do — which drugs get tested, how trials get designed and what researchers say they couldn't have known without being in the room.

    How the Lived Experience Is Shaping Research

  3. 12/10/2025

    Building a Home Through Care With Michelle

    When Michelle's 91-year-old father was diagnosed with PSP, she bought a house with an in-law suite to become his primary caregiver. She shares the nine months they spent together: the challenges of educating medical staff about PSP, the late-night conversations that revealed her father's hidden dreams and the advice that changed her life. After his passing, she opened the vintage store they'd dreamed about together and remains committed to raising awareness about PSP. Her message to other potential caregivers: "You're never, ever, ever going to regret doing it."

    Building a Home Through Care With Michelle

  4. 11/12/2025

    Interdisciplinary Care With Dr. Danielle Shpiner

    Juggling appointments with a neurologist, physical therapist, speech pathologist and social worker — all in different places, none of them talking to each other — is exhausting. Dr. Danielle Shpiner is changing that. As Medical Director of the CurePSP Center of Care at the University of Miami, she's pioneered an interdisciplinary care model where patients meet with an entire team of specialists in one visit, who then collaborate on a single coordinated plan. She shares how they built this approach, why telemedicine has been a game-changer for patients who can't travel and what she's learning about whether this model actually improves outcomes. If you've ever felt like you're the only one connecting the dots in your care, this conversation will show you what’s possible. Explore our entire Centers of Care network here.

    Interdisciplinary Care With Dr. Danielle Shpiner

  5. 10/15/2025

    Part Three: The Finish Line and Beyond

    What does it actually take to go from saying yes to crossing the finish line? In this final episode of our three-part series, follow Team CurePSP runners through the demanding journey of marathon training—from Matt Zarras's first mile when he couldn't run and wanted to quit, to Robin Loewald's 4:30 AM summer training runs, to the emotional weight of race week. Learn how running gave these runners control in uncontrollable circumstances, space to grieve and a way to stay connected to their loved ones. Experience the raw emotions of race day and how marathon running offered these family members something that PSP had taken away: the ability to do something, to make an impact and to keep moving forward.Learn more about Team CurePSP here.

    Part Three: The Finish Line and Beyond

  6. 10/15/2025

    Part Two: Why We Run

    Who are the runners putting in the work for Team CurePSP? In this second episode of our three-part series, meet Robin Loewald, Chris Wall, Matt Zarras and Larissa Auble Burgoyne—four runners with different stories but one shared mission. Discover what compelled them to commit to months of training and fundraising, how they navigated the challenge of asking people for money and the unexpected connections they built along the way. From cornhole tournaments to weekly social media updates, these runners found creative ways to raise awareness while honoring their loved ones. Through fundraising they built community, discovered untold stories and found a way to repurpose their grief.Learn more about Team CurePSP here.

    Part Two: Why We Run

  7. 10/15/2025

    Part One: The Starting Line With Team CurePSP

    How does an idea transform into a thriving community that's raised nearly half a million dollars? In this first episode of our three-part series, we trace the origins of Team CurePSP from a dedicated staff’s vision to the first five runners who took on the NYC Marathon in 2023. Hear from Christine Sanford, Rich Spain and Sabrina Da Rocha as they share how they built an intimate endurance fundraising program that offers families affected by PSP, CBD and MSA something they have lacked: genuine connection and support.Learn more about Team CurePSP here.

    Part One: The Starting Line With Team CurePSP

  8. 09/10/2025

    Navigating a Diagnosis With CurePSP’s Patient and Care Partner Advocacy Team

    People living with PSP, CBD or MSA face a unique set of challenges that require specialized and informed experts. Meet the CurePSP Patient Care Partner and Advocacy team: Jessica, Courtney, Kelsey and Joanna, the versatile group behind the phone calls, educational resources and Capitol Hill advocacy efforts that are building genuine community connections for those navigating these rare diseases.They discuss how support groups have evolved into hubs of both emotional support and practical medical education, why finding others who speak this unique language can be life-changing and how an emerging palliative care approach focused on dignity and quality of life could transform outcomes. At the heart of CurePSP’s mission, this team works to reduce diagnostic delays, expand the specialized Centers of Care network and ensure families have access to quality resources regardless of language, location or financial barriers. Through legislative wins, expanded care networks and direct family support, the PCA team is creating tangible change for a community that continues to find joy and connection despite the challenges.Resources mentioned:  Support Groups Educational Resources  Advocacy Page

    Navigating a Diagnosis With CurePSP’s Patient and Care Partner Advocacy Team
See All (17)

Trailer

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About

The Collective Mind features conversations with care partners, advocates, physicians, scientists, researchers and staff members who are bringing us closer to a cure for PSP, CBD and MSA. We aim to educate and share the experiences of CurePSP community members, spreading awareness to make living with these diseases a little more manageable. Host: Oscar Sullivan

Information

  • Creator
    CurePSP
  • Years Active
    2024 - 2026
  • Episodes
    17
  • Rating
    Clean
  • Copyright
    © CurePSP, Inc., unless attribution otherwise noted. CurePSP, Unlocking the Secrets of Brain Disease, and Because Hope Matters are registered trademarks of CurePSP, Inc
  • Show Website
    The Collective Mind: A CurePSP Podcast

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