NEW YORK & MIAMI (September 21, 2023) — The Parkinson’s Foundation today announced the launch of a partnership with CurePSP on the development of a multi-part educational program geared towards healthcare professionals. The program focuses on “atypical Parkinsonian syndromes,” including: progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA).
"As a leader in professional medical education in the Parkinson's space, our partnership with CurePSP allows us to expand our efforts to an area with more limited training opportunities and resources," said Elizabeth Pollard, Vice President and Chief Training and Education Officer for the Parkinson's Foundation. "We want to help physicians, nurses, rehabilitation therapists, social workers and other healthcare professionals to better understand distinct needs and care considerations with atypical Parkinsonism."
PSP, CBD and MSA are rare, life-limiting, neurodegenerative diseases with no current disease-modifying treatments. Symptoms often progress quickly, especially compared to Parkinson’s disease (PD), and include significant imbalance, socially-isolating communication changes, autonomic dysfunction, and swallowing and vision difficulty. It takes an average of 2.5 years from the start of symptoms to arrive at a clinical diagnosis of PSP, CBD or MSA and over half of people are initially diagnosed with PD. The two organizations aim to address these gaps.
“When given a diagnosis of PSP, CBD or MSA, patients and families face a loss of the specialized clinical care and resources widely available to the PD community and, unfortunately, commonly find themselves in the challenging position of educating their healthcare team on their disease,” said Jessica Shurer, Director of Clinical Affairs and Advocacy for CurePSP. “Serving similar communities and with parallel missions, we are excited to build upon PF’s robust medical education offerings and collaboratively approach the improvement of quality of care and of life of this community.”
The “Atypical Parkinsonism Program” includes an accredited three-part podcast series (launched); an online course (launching in 2024); and an in-person Advanced Team Training (launching in 2024) offered to Team Training alumni.
About the Parkinson’s Foundation
The Parkinson’s Foundation makes life better for people with Parkinson’s disease by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience and passion of our global Parkinson’s community. Since 1957, the Parkinson’s Foundation has invested more than $425 million in Parkinson’s research and clinical care. Connect with us on Parkinson.org, Facebook, Twitter, Instagram or call 1-800-4PD-INFO (1-800-473-4636).
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, we establish important partnerships and funds critical research internationally. Through our advocacy and support efforts, we enhance 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 our mission and all our services. CurePSP is a registered 501(c)(3) charity within the United States (EIN: 52-1704978). For more information, please visit www.curepsp.org.
About Parkinson’s Disease
Affecting an estimated one million Americans, Parkinson’s disease is the second-most common neurodegenerative disease after Alzheimer’s and is the 14th-leading cause of death in the U.S. It is associated with a progressive loss of motor control (e.g., shaking or tremor at rest and lack of facial expression), as well as non-motor symptoms (e.g., depression and anxiety). There is no cure for Parkinson’s and nearly 90,000 new cases are diagnosed each year in the U.S.
About Atypical Parkinsonism
PSP, CBD and MSA are caused by the progressive loss of brain cells over time primarily due to the abnormal folding and accumulation of proteins. Considered “atypical Parkinsonian syndromes” due to overlap with motor symptoms of the more common Parkinson’s disease, arriving at the correct diagnosis of PSP, CBD or MSA can be a lengthy and confusing process for patients, families and healthcare professionals alike. Symptoms are complex and carry high risk of complications. The average life expectancy for all three diseases is 8 years from symptom onset. It is estimated that up to 12 individuals per 100,000 people are living with PSP, CBD or MSA, although the prevalence may be higher due to the frequency of misdiagnosis with other neurological conditions. While the progression of the diseases cannot be slowed at this time, there are medications, rehabilitation therapies and lifestyle modifications available to manage symptoms. Awareness and education are critical to enhancing access to diagnosis and care.