S3 Ep1: How the Lived Experience Is Shaping Research

S3 Ep1: 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.

S2 Ep6: 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."

S2 Ep5: 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 [https://www.psp.org/centers-of-care].

S2 Ep4: 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 [https://www.psp.org/team-curepsp].

S2 Ep4: 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 [https://www.psp.org/team-curepsp].