In the Shadow of Parkinson's, New Grants Offer a Lifeline for Rare Diseases

NEW YORK, NY – June 22, 2026 – For those living with rare neurodegenerative diseases, the path to a diagnosis is often a grueling odyssey, followed by a frustrating search for care in a system not built for them. Today, the nonprofit CurePSP announced a $155,000 investment aimed squarely at this gap, funding four innovative projects designed to remodel how care is delivered for progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA).

These conditions, often called “atypical parkinsonism,” share early symptoms with the more widely known Parkinson’s disease, but their progression is typically faster and their needs are distinct. The new grants, part of the Collaborative Approaches to Resources, Education and Support (CARES) program, will be distributed among seven leading medical institutions in the U.S. and Canada.

“Now in its fourth year, CARES advances best practices for progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA),” said Jessica Shurer, Director of Clinical Affairs and Advocacy at CurePSP. Shurer noted that the funded projects must focus on critical areas like “person-centered care, access, underserved populations or medical education,” directly targeting the system’s most glaring weaknesses.

The Agony of a Diagnostic Odyssey

To understand the significance of this funding, one must first understand the reality for patients. The journey often begins not with clarity, but with confusion. Symptoms like severe imbalance, vision problems, and cognitive changes can lead to an initial misdiagnosis of Parkinson’s disease. Research shows it can take, on average, a staggering 2.5 years from the first symptom to a correct clinical diagnosis of PSP, CBD, or MSA. During that time, the diseases progress, and opportunities for early intervention are lost.

“We found ourselves having to educate our own healthcare team,” one caregiver for a person with PSP shared, a sentiment echoed throughout patient communities. Families are often left to navigate a complex medical landscape, armed only with information they’ve gathered themselves. The specialized clinical care and robust resources widely available to the Parkinson’s community are frequently absent for those with atypical parkinsonism, leaving them feeling isolated and overlooked.

This is the gap CurePSP’s grants aim to fill—not by simply throwing money at the problem, but by funding targeted research to build the infrastructure that has been missing. The projects are designed to create tangible tools, from caregiver support curricula to new frameworks for clinical care, that can be implemented across the healthcare system.

A Targeted Strategy to Remodel Care

The four funded projects represent a multi-pronged attack on the status quo. Each initiative addresses a specific, well-documented failure point in the patient journey:

• Empowering Caregivers: At Rush University and the University of Pennsylvania, researchers will adapt a proven peer mentorship program for caregivers. The original program, PERSEVERE, was developed for Lewy body dementia and trains experienced care partners to support and guide newer ones. This project will create a tailored curriculum for the unique challenges of PSP and CBD, acknowledging that the immense burden of these diseases falls heavily on families.

• Redefining Clinical Care: A collaboration between the University of Miami, Northwestern University, and the University of California, San Diego will confront a core problem: care models for these diseases have historically been borrowed from Parkinson's. The team will survey clinicians and people with lived experience to identify barriers to effective, interdisciplinary care and propose new outcome measures. The goal is to build a framework for care that is designed specifically for the needs of PSP, CBD, and MSA patients.

• Breaking Down Barriers to Diagnosis: In Canada, two projects co-funded with Parkinson Canada will tackle access and equity. The University of Alberta and the University of Toronto will use data mapping and interviews to identify why patients in underserved populations face delays in diagnosis. Their work will inform evidence-based recommendations to streamline referrals and get patients to specialists sooner.

• Bringing Wellness Home: Another joint effort with Parkinson Canada, led by the University of British Columbia and the University of California, San Diego, will evaluate a virtual wellness program. The eight-week program offers chair yoga, vocal exercises, and peer support sessions to people living with atypical parkinsonism. By measuring well-being, resilience, and caregiver burden, the study aims to validate non-drug therapies that can improve quality of life and be accessed from anywhere.

The Power of Collaborative Investment

This latest funding round, which has grown from an initial $81,000 in 2023 to $155,000 today, is part of a larger, more deliberate strategy. CurePSP, under the leadership of CEO Kristophe Diaz, PhD, has positioned itself as a “catalyst for a cure,” building partnerships and expanding its network to accelerate progress.

The co-funding with Parkinson Canada is a prime example. The partnership, formalized in early 2026, leverages the strengths of both organizations to address a recognized knowledge gap and improve care for Canadians affected by these diseases.

This collaborative ethos is also reflected in the expansion of CurePSP’s Centers of Care network, which has grown to 33 specialized medical centers across North America. These centers provide the high-quality, interdisciplinary care that is so desperately needed and serve as hubs for the kind of clinical research the CARES program funds. By requiring projects to involve at least two centers, the program ensures that solutions are developed collaboratively and can be scaled across the network.

While the CARES grants focus on improving care today, they are deeply connected to the organization’s long-term vision. By building a more robust clinical infrastructure and a more engaged patient community, CurePSP is laying the groundwork for the clinical trials and industry investment necessary to find a cure tomorrow.

A System Slowly Awakening

For decades, PSP, CBD, and MSA existed in the margins of neurology. But there are signs the system is slowly beginning to awaken to their importance. In a significant development this year, CurePSP’s Jessica Shurer was appointed to the National Parkinson's Project Advisory Council. Her presence ensures that for the first time, these oft-forgotten diseases will be represented in a major federal initiative, potentially influencing national research priorities and care policies.

The $155,000 invested by CurePSP is more than a line item in a budget; it is a strategic push to drag these diseases out of the shadows. It is an investment in building a world where a diagnosis is not the end of a journey, but the beginning of a well-supported fight.