4D: Deep Dive into Degenerative Diseases – DD SIG Navigating the Path Episode 7: CurePSP

Podcast: 4D: Deep Dive into Degenerative Diseases – ANPT
Host: Ken Vanacco (A, PT, Outpatient Neuro Clinic at Brown University Health)
Guest: Jessica Shore (B, Director of Clinical Affairs and Advocacy, CurePSP)
Release Date: January 29, 2026

Main Theme / Purpose

This episode offers a comprehensive introduction to CurePSP, a non-profit organization supporting individuals affected by progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA)—the so-called “atypical Parkinsonian conditions.” Through candid conversation with Jessica Shore, the episode explores the vital role of CurePSP in advocacy, education, community building, resources for healthcare professionals and caregivers, and the ongoing challenges in diagnosis and treatment.

Key Discussion Points & Insights

Jessica Shore’s Background and Role at CurePSP

• Jessica is a clinical social worker with a decade of experience at UNC Chapel Hill Movement Disorder Center, specializing in both Parkinson’s and atypical Parkinsonian disorders.
• “These diseases are so complex and high needs that they needed a lot more support. So I became very specialized in those diseases…” (01:53)

Her responsibilities at CurePSP include:

• Leading the Centers of Care Medical Network (currently 38 academic institutions, expanding internationally).
• Facilitating working groups, collaborative research, and grants focused on person-centered care and access.
• Overseeing all support, outreach, education, legislative, and advocacy initiatives.
• Summing up CurePSP’s mission:
  “Raise awareness, build community, improve care, and find a cure for PSP, CBD, and MSA.” (06:18)

Disease Terminology and Identity

• Challenges with Disease Labels:
  Jessica discusses the evolution from “Parkinson’s Plus” to “atypical Parkinsonian conditions,” noting both terms’ limitations and the importance of naming each disease individually for clarity and advocacy.
  • “There’s not a one size fits all for how we talk about the diseases… we need to just keep naming them individually for awareness purposes.” (07:50)

Diagnostic Challenges and the Role of Physical Therapists

• Diagnosis is complex and often delayed:
  • These conditions progress ~3x faster than Parkinson’s disease.
  • It typically takes 2.5-3 years for accurate diagnosis; over 60% of patients are misdiagnosed with Parkinson’s initially. (09:11)
  • Progression: “On average from symptom onset to death in about seven to eight years.” (09:11)
• Lack of biomarkers:
  Diagnosis relies heavily on clinical observation due to absent biomarkers (<research is ongoing>).
• Critical role of allied health professionals:
  • PTs, OTs, and SLPs are well-positioned to detect atypical features due to their frequent contact with patients.
  • PTs often note when symptoms or disease course differ from typical Parkinson’s, enabling earlier re-evaluation.
  • “You’re seeing them more frequently than neurologists… trust your own judgment with that.” (13:47)
• Nuanced clinical signs:
  PTs can observe differences in postural instability, retropulsion, ataxia in MSA, or behaviors such as “the rocket sign” in PSP (difficulty rising from a chair, dual-tasking deficits).

Notable Quote:

• “Physical therapists… are really good at picking up on what is not Parkinson’s disease.” (11:05)

Resources & Education for Professionals

• CurePSP & Parkinson’s Foundation Initiatives:
  • 3-part podcast series and a 90-minute online course, accredited, free of charge, focused on atypical Parkinsonism. (18:26)
  • Collaboration with Shirley Ryan AbilityLab to produce a webinar specifically for rehab therapists on the rehabilitation implications of PSP, CBD, and MSA (available online, with plans for expanded content in 2026). (21:10)
• Access for All Professionals:
  • Materials and booklets for clinics and families, including “What every PT/OT/SLP/CSW should know about PSP, CBD and MSA.”
• Provider Toolkit & Continuing Ed:
  “Any healthcare professional can order our materials for your clinics. We’ll send that to you for free.” (27:53)

Resources & Support for Patients and Caregivers

• Educational and Support Offerings:
  • Regular webinars, educational series for newly diagnosed patients (bi-monthly), Spanish-language webinars, and an annual in-person community weekend.
  • Comprehensive online and printed educational materials.
  • Peer support network: “Individuals with lived experience, usually former care partners, support those currently affected.” (22:10)
  • Over 15 virtual, international support groups tailored by audience (diagnosis, caregiver role, bereavement, flying solo).
• Grants and Assistance:
  • Quality of Life Respite Grant: 100 hours of paid in-home care for families.
  • Brain donation assistance, connections to Centers of Care, and advocacy opportunities.
• Website Navigation:
  • Clear sections: “I want to learn,” “I need support,” “I want to help”—tailored for users’ needs (26:36).

Notable Quote:

• “The fact that it's tailored in such a way speaks volumes to what CurePSP mission is, to help these individuals and their families in a very challenging diagnosis.” (27:28)

The Importance of Multidisciplinary Care and Professional Advocacy

• Empowering Every Team Member:
  • PTs, along with other clinicians, can be critical in educating families and providing resources.
  • Encouragement for all professionals to stock and distribute CurePSP’s free educational materials.
  • “Physical therapists are just as important… you all can play that role too [in connecting patients to support].” (29:04)

Memorable Moments & Quotes

• On Labels and Language:
  “How we talk to and about the Parkinson’s community and approach resources and care for them… looks so different for people with the atypical Parkinsonian conditions.” (01:45)
• Provider Collaboration:
  “It takes a team, right? Takes a group of individuals to help care for these people.” (15:23)
• Patient and Family Journey:
  “When you are diagnosed with something that you’ve likely never heard of… it’s a vulnerable experience enough, it’s really confusing.” (27:53)
• Free Resources:
  “Any healthcare professional can order our materials for your clinics. We’ll send that to you for free.” (29:04)

Key Timestamps

• 01:22 – Jessica’s background and journey to CurePSP
• 06:18 – CurePSP’s mission and the umbrella of diseases it supports
• 09:11 – Diagnostic challenges, lack of biomarkers, rapid progression
• 13:10 – Physical therapists’ unique role in early detection
• 15:54 – The value of assessment tools and clinical signs for differential diagnosis
• 18:26 – CurePSP resources and continuing education for therapists
• 22:10 – Support programs for patients and caregivers
• 26:36 – Navigating CurePSP’s website and accessing support
• 29:04 – Free resources for clinics and updates on educational material
• 31:30 – Jessica’s personal interests outside of work

Notable Light-hearted/Bonding Moments

• [34:07] Jessica humorously shares a story about accidentally injuring her wrist on a cactus before the call, joking about “dangerous work” and sparking laughter with Ken.
• [35:01] Ken jokes about New England’s lack of cacti, ending the episode on an upbeat, collegial note.

Final Words

This episode offers clear, actionable insights for clinicians, caregivers, and anyone interacting with patients with PSP, MSA, and CBD. Listeners learn about practical diagnostic skills, the importance of education, and how to connect with a compassionate, resource-rich advocacy network.

“Our community is not just people diagnosed and families… it’s people like you who are working with them every day. We’re here to work with you all and learn from you all and, you know, support you as much as we can too.” —Jessica Shore (30:51)