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.

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: 

Educational Resources 

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.