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 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."

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. 

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. 

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. 

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. 

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

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 caregivers. Over 10 million young adults are quietly reshaping their lives around responsibilities they never saw coming, contributing to the $600 billion in unpaid care that family caregivers provide annually across America.She spoke to CurePSP about founding Caregiver Collective and writing her new book, Generation Care: The New Culture of Caregiving, a deeply personal yet universal account of young caregivers across the country. From managing PSP and dementia to strokes and chronic illness, Generation Care exposes how this hidden crisis is reshaping careers, relationships and life plans.While caregivers in America currently face immense structural challenges, this conversation illuminates how a generation’s commitment to family is quietly building the foundation for a more compassionate, community-centered approach to care. Learn more about Generation Care: The New Culture of Caregiving here. 

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 pilgrimage on the Camino de Santiago, successfully advocate for federal legislation in Congress and redefine what partnership looks like in the face of a PSP diagnosis.Chris was initially diagnosed with Parkinson's in 2015, but received a revised PSP diagnosis in 2021, a common experience in our community. Rather than retreating, they've embraced a philosophy of making the most of their time together. You'll hear how Mike's background as a social worker has informed their approach to finding resources and maintaining Chris's independence, how sharing personal stories can be a powerful advocacy tool and their practical strategies for staying active despite PSP's unpredictable symptoms.Their journey is a powerful reminder that while PSP brings challenges, it doesn't have to limit what's possible when you have determination, partnership and the right support system.For more information and the latest updates on CurePSP’s advocacy efforts, click here.

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 spoke to us about the mysteries of brain inflammation, its role in PSP and CBD and how this research could revolutionize the way we diagnose, treat and understand these conditions. With support from CurePSP’s Pipeline grant program, which provides seed funding to support translational projects focusing on new therapeutics and biomarkers for tauopathies, Dr. Malpetti will be developing an innovative blood test to measure patterns of inflammation in people living with PSP and CBD. Read more about her study here. 

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-brains” created from patient blood cells, they aim to unravel the complex relationship between tau and neuron survival. Dr. Bowles shares how understanding these mechanisms could open the door to novel treatments for primary tauopathies and prevent neuron death in these diseases. With support from CurePSP’s Pathway grant program, which provides seed funding to support projects studying the fundamental neurobiology of PSP and CBD, Dr. Bowles hopes to develop new treatments to prevent these mutations. Read more about her study here.

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 representatives, several factors emerged to create the momentum necessary for this landmark moment. To reflect on how we got here and what comes next, I spoke with two of CurePSP’s most dedicated advocates: Jessica Shurer, director of clinical affairs and advocacy, and Julie Balasille, longtime volunteer and macro social worker with extensive professional experience in legislative and community advocacy in both the US and Canada. We discussed strategies for empowering the community, lessons from previous legislative successes, the influence of Rep. Wexton’s advocacy, highlights from this year’s efforts and key moments to look forward to in the future.For the latest updates and ways to get involved, visit CurePSP’s advocacy page here.

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 group of similarly independent individuals. The group offered a space where members could be honest and discuss important topics like social anxiety, coping with symptoms and how to feel prepared as one’s situation changes, fostering a sense of hope and resilience. I spoke to Eugenia and the two support group leaders, Adriana Gonzalez and Diane Breslow, on how the members of Flying Solo are empowering each other to live their own way. Learn more about Flying Solo here. 

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 the immune system seems to play in disease progression, the intriguing similarities and differences between PSP and Alzheimer's, and what can be learned from the success of immune system therapeutics in cancer and autoimmune disease. Supported by CurePSP’s Pathway Grant Program, Dr. Rexach’s project aims to piece together a picture of the altered messengers of the immune system that could pave the way for future immune-based therapies. Read more about her study here. 

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 grace. Bob spoke to me almost two years after Linda’s death on the lessons he learned as a care partner, humor as a coping mechanism and the importance of grieving daily. Read Bob’s full tribute to Linda here. 

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.