- Partnership provides educational resources on navigating cognitive changes to people with Parkinson’s and their care partners
- Among the estimated 6 million people worldwide with Parkinson’s, many say thinking and memory changes — ranging from mild cognitive impairment to dementia — are among the most worrisome potential symptoms
- Free resources are available now at michaeljfox.org; and more coming soon in 2021
NEW YORK AND SAN DIEGO (October 6, 2020) – Today, The Michael J. Fox Foundation for Parkinson’s Research (MJFF) and Acadia Pharmaceuticals announce a partnership to provide free educational materials to patients and their care partners. The resources will focus on cognitive changes and other non-motor symptoms in Parkinson’s, something that not every individual with the disease will experience, but that many worry about.
“‘Will I get dementia?’ ‘What can I do now to prevent it?’ These are just a few of the questions I hear regularly from patients with Parkinson’s and their families,” said Rachel Dolhun, MD, MJFF vice president of medical communications and a board-certified movement disorder specialist. “This partnership aims to educate the community and to empower people to take action today — whether that’s starting a conversation with family to lessen fear or practicing healthy habits to boost brain health.”
Stigma and misperceptions about Parkinson’s disease (PD) and its symptoms can hinder much-needed research into understanding the disease and how to treat and, ultimately, prevent it. The MJFF-Acadia partnership will foster a dialogue around thinking and memory changes and associated neuropsychiatric symptoms in PD in order to connect patients and families to practical and accessible resources.
Through support from Acadia Pharmaceuticals, the Foundation will release a series of resources on cognitive changes — including an “Ask the MD” video, a webinar and a podcast — culminating with the spring 2021 relaunch of MJFF’s guide, “Navigating Cognitive Changes in Parkinson’s Disease” that will include the most recent information on currently available treatments and research. Funding from Acadia allows the Foundation to maintain editorial oversight in the creation of high-quality educational resources, while directing donor-raised dollars toward critical research.
Defining Cognitive Changes and Responding to an Under-Addressed Need
Parkinson’s is characterized as a movement disorder due to its prominent motor symptoms — tremor, slowness, stiffness, and walking and balance problems. However, the “invisible” non-motor symptoms of PD — cognitive, mood and sleep changes; hallucinations and delusions; constipation; fatigue and others — can significantly impact quality of life.
“Our collaboration with The Michael J. Fox Foundation will support more education, and ultimately enable better care for individuals affected by Parkinson’s disease,” said Ponni Subbiah, M.D., M.P.H., Senior Vice President, Global Head of Medical Affairs and Chief Medical Officer at Acadia Pharmaceuticals. “There is an urgent need for more resources to address potential cognitive, behavioral and neuropsychiatric symptoms associated with dementia. This partnership will play a key role in connecting patients and their families to more tools to navigate the entire course of their disease.”
Thinking and memory (cognitive) changes — and associated symptoms, including psychosis — can appear during the course of Parkinson’s disease, but not everyone experiences them. And for those who do, they range in severity. Estimates vary, but of the 6 million people who live with the disease worldwide, 40 percent may be affected by dementia — such as Parkinson’s disease dementia, dementia with Lewy bodies, or other forms — and 25 percent may experience milder cognitive changes. Our population is aging, and according to a 2018 study, the global Parkinson’s prevalence is projected to double by 2040. Educational resources to better understand and navigate Parkinson’s cognitive changes and associated symptoms are urgently needed.
About The Michael J. Fox Foundation for Parkinson’s Research
As the world's largest nonprofit funder of Parkinson's research, The Michael J. Fox Foundation is dedicated to accelerating a cure for Parkinson's disease and improved therapies for those living with the condition today. The Foundation pursues its goals through an aggressively funded, highly targeted research program coupled with active global engagement of scientists, Parkinson's patients, business leaders, clinical trial participants, donors and volunteers. In addition to funding more than $900 million in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure. Operating at the hub of worldwide Parkinson's research, the Foundation forges groundbreaking collaborations with industry leaders, academic scientists and government research funders; increases the flow of participants into Parkinson's disease clinical trials with its online tool, Fox Trial Finder; promotes Parkinson's awareness through high-profile advocacy, events and outreach; and coordinates the grassroots involvement of thousands of Team Fox members around the world.
For more information, visit us at https://michaeljfox.org.
About Acadia Pharmaceuticals
Acadia is trailblazing breakthroughs in neuroscience to elevate life through science. For more than 25 years we have been working at the forefront of healthcare to bring vital solutions to people who need them most. We developed and commercialize the first and only approved therapy for hallucinations and delusions associated with Parkinson’s disease psychosis. Our late-stage development efforts are focused on dementia-related psychosis, negative symptoms of schizophrenia and Rett syndrome, and in early-stage clinical research we are exploring novel approaches to pain management, cognition and neuropsychiatric symptoms in central nervous system disorders. For more information, visit us at www.acadia-pharm.com and follow us on LinkedIn.
The Michael J. Fox Foundation
Acadia Pharmaceuticals Inc.