The Collective Mind: A CurePSP Podcast

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 dre...

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...

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...

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 conne...

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 fundrais...

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. T...

At 32, Jennifer Levin was celebrating her first TV writing credit when her father's PSP diagnosis changed everything. She immediately found herself managing medical appointments from across the country, becoming a healthcare proxy, coordinating care — all while trying to maintain her budding career. She felt completely alone.  Then she discovered a staggering truth: one in four millennials are car...

Welcome back for Season Two! This season is all about you: our dedicated community members. Your commitment is the glue of our organization, a guiding light that inspires others and grows our network. For community members Chris and Mike, commitment to each other — and to making the most out of every single day — has been transformative. It has allowed them to complete an incredible 118-mile pilgr...

Clinical trials are urgently needed for PSP and CBD. Dr. Maura Malpetti and her team at the University of Cambridge have identified chronic brain inflammation as a key contributor to disease progression, and are developing a blood test for inflammation that will help track the effectiveness of clinical trials and treatments, thus accelerating the development of more clinical trials.  Dr. Malpetti...

Tauopathies remain some of the most mysterious diseases in science, with no current treatments available for conditions like PSP, CBD and MSA. Dr. Kathryn Bowles and her team at the University of Edinburgh are studying mutations in the MAPT gene, a known driver of tauopathies, and how these mutations alter mitochondrial function in brain cells. Using cutting-edge 3D organoid models, or “mini-brain...

Anyone affected by PSP, CBD or MSA knows the importance of advocating for yourself. After years of limited awareness, 2024 marked a turning point for PSP, CBD and MSA advocacy with the historic passage of the National Plan to End Parkinson’s Act. From Congresswoman Jennifer Wexton’s announcement of her PSP diagnosis to the numerous messages that our community members sent to their local representa...

Eugenia Aguirre found herself at a crossroads when she was diagnosed with corticobasal degeneration (CBD). Overwhelmed by the rapid lifestyle changes that accompanied her diagnosis, she chose to make the most of every day and fight as hard as she could. Living alone meant managing the disease was a lonely and daunting journey, until she connected with the Flying Solo Support Group, where she met a...

The causes of progressive supranuclear palsy (PSP) remain one of the biggest mysteries of the disease. Dr. Jessica Rexach and her team at UCLA have been scouring sequencing data from over 10,000 individuals searching for clues in the DNA that could explain how changes in the immune system might influence why some individuals develop the disease. Dr. Rexach spoke to me about the crucial role that t...

Caring for a loved one is a grueling journey that no care partner would ever turn away from. Bob Weide did not know what to expect when he started noticing little differences in his wife Linda’s balance and speech. He could not have known that these were the first symptoms of progressive supranuclear palsy (PSP), an uncompromising disease that requires seemingly endless amounts of patience and gra...

Meet Oscar and learn more about this original series that will spotlight stories and insights from the CurePSP community and discuss the latest in cutting-edge research.