CurePSP Expands Specialized Care Network for Rare Neurodegenerative Diseases

NEW YORK (November 17, 2022) /PRNewswire/ — CurePSP has announced the designation of Queen’s Parkinson’s and Movement Disorders Center in Hawaii and the Department of Neurology at the University of Michigan as CurePSP Centers of Care, bringing the total to 30 centers across the United States and Canada. The expansion of this network of specialized medical centers aims to enhance access to accurate and early diagnosis, high-quality clinical care and comprehensive support for progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA).

Over 55,000 people in the United States are thought to be living with PSP, CBD and MSA. Current figures for these neurodegenerative diseases are likely underestimated, as many people are misdiagnosed with another condition, such as the more common Parkinson’s disease.

“People with PSP, CBD and MSA benefit from the support and expertise of clinicians with an intimate understanding of their complex symptoms and unique needs,” said Jessica Shurer, director of clinical affairs and advocacy at CurePSP. “Our Center of Care program, which was established in 2017, is pivotal in the efforts to optimize the standard of care delivery and drive multi-center research initiatives for this patient population.”

Centers must demonstrate comprehensive care, collaboration with CurePSP and the Center of Care network, community education and outreach, professional education and connection to research. “We are thrilled for Queen’s Medical Center and the University of Michigan to join our network committed to PSP, CBD and MSA,” Shurer said.

The partnerships come at an opportune time for both institutions, as they have each been building multidisciplinary approaches to care for PSP, CBD and MSA that will benefit from the integrated CurePSP network of support and resources. Dr. Michiko Bruno of Queen’s Medical Center looks forward to sharing these options with her patients who are always eager for new information.

“CurePSP is helpful because we don’t have to start every patient from scratch,” Dr. Bruno said. “We can lean on a collective wisdom to get them resources.”

Dr. Bruno had been developing her center’s telemedicine offerings before the pandemic, and those options have only become more accessible since, giving patients alternatives to traveling long distances to other parts of the United States for care. The new partnership with CurePSP ensures that her programs will continue to grow.

“We’re always trying to build coordination,” Dr. Bruno said. “This visibility will lead to even more hope.”

Dr. Chauncey Spears of the University of Michigan views joining the CurePSP Center of Care network as a natural step in the process of improving person-centered care. The neurology clinic collaborates with speech language pathologists, urologists and other disciplines to shape care based on a patient’s input and goals. Dr. Spears emphasizes his patients’ desire for disease benchmarks to understand their progression and maintain their quality of life.

“The patient’s needs are amplified,” Dr. Spears said. “We’re trying to prioritize the things they value most in life to lessen the burden and make the most of this.”

The University of Michigan joins Michigan State University (MSU) as the only other CurePSP Center of Care in Michigan, and Dr. Spears wants state residents to know that both resources are within reach. He hopes that increased awareness of PSP, CBD and MSA will accelerate discovery of treatments and a cure, and he remains focused on using the resources of CurePSP and the Center of Care network to serve their community.

“Whether it’s us or MSU, we all share the same goals,” Dr. Spears said. “It’s nice to collaborate on our strengths and continue formalizing access to research.”

For a complete listing of CurePSP Centers of Care, click here. 

About CurePSP

CurePSP is the leading nonprofit organization dedicated to the awareness, care and cure for three neurodegenerative diseases: progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA). As a catalyst for new treatments and a cure, CurePSP establishes important partnerships and funds critical research. Through its advocacy and support efforts, CurePSP enhances education, care delivery and quality of life for people living with PSP, CBD and MSA and their families. Science, community and hope are at the heart of CurePSP’s mission and all its services. CurePSP is a registered 501(c)(3) charity within the United States (EIN: 52-1704978).

Contact:

Kristophe Diaz, PhD

diaz@curepsp.org

646-725-1453