SAN DIEGO–(BUSINESS WIRE)–Acadia Pharmaceuticals Inc. (Nasdaq: ACAD) today announced the national launch of Yours, Truly, a multicultural, storytelling campaign to bring greater awareness and understanding of the varied experiences of the non-motor symptoms associated with Parkinson’s disease. In collaboration with StoryCorps, the campaign provides the Parkinson’s disease community a unique forum to record, share and archive their personal stories, in both Spanish and English, while also seeking to reduce the stigma around non-motor symptoms by sharing personal experiences. Available at YoursTrulyPDP.com, the website features stories from the Parkinson’s disease community, as well as access to bilingual educational resources from advocacy organizations from across the U.S.
“Parkinson’s disease affects about one million people in the United States, which may present with both motor and non-motor symptoms. Around half of the people living with Parkinson’s disease may develop hallucinations or delusions over the course of their disease, but the majority of people don’t proactively tell their physicians about these symptoms,”1-3 said Dr. Gus Alva, Assistant Professor at University of California, Riverside Medical School, Department of Neuroscience. “I am a bilingual (Spanish) physician who works with patients across cultures, and I believe that sharing personal stories about loved ones living with Parkinson’s disease may increase awareness of the symptoms while also helping reduce the stigma associated with the disease. As a result of hearing the experiences of others, patients and caregivers may be more inclined to ask for support and discuss potential treatment options.”
In a 2020 survey of StoryCorps participants, ninety-four percent felt comfortable sharing personal things about themselves, and more than half thought they would be more comfortable sharing with others in the future. Further highlighting storytelling’s impact to increase compassion, ninety-one percent of online survey respondents reported that listening to StoryCorps helped them better understand the experiences of people who are different from them.4
“We are excited to collaborate with Acadia Pharmaceuticals on the Yours, Truly campaign,” said Alissa Pelc, Managing Director, Corporate Partnerships at StoryCorps. “This work will build upon StoryCorps’ long-standing commitment to providing people with serious illness, and their loved ones, the opportunity to record and share their voices and stories – ensuring that the varied experiences of the Parkinson’s disease community will be preserved for generations to come.”
Signs and symptoms of Parkinson’s disease can vary with people experiencing both motor symptoms (such as slowness of movement, resting tremors, limb stiffness, and trouble with balance) and non-motor symptoms (such as constipation, impaired bladder control, anxiety and depression, loss of mental sharpness/acuity, hallucinations and delusions).5,6 When people living with Parkinson’s disease experience hallucinations and/or delusions related to their condition, it is known as Parkinson’s disease psychosis. A hallucination is defined as a perception-like experience that occurs without an external stimulus and is sensory (seen, heard, felt, tasted, smelled) in nature. A delusion is defined as a false, fixed belief despite evidence to the contrary.7
“Yours, Truly is the latest effort in Acadia’s steadfast commitment to elevate the realities of life lived with Parkinson’s disease, including those impacted by psychosis, while also seeking to reduce the stigma that is often associated with the disease,” said Steve Davis, Chief Executive Officer of Acadia. “By preserving and amplifying the voices of those impacted, we hope others who may be experiencing or observing symptoms will feel empowered to speak out and advocate for themselves, and their loved ones.”
The Yours, Truly campaign hopes to “hit the road” in the StoryCorps’ MobileBooth (an Airstream trailer that crisscrosses the country year-round) to record stories safely, in person, during a limited series of grassroots events planned for early 2022. With the help of advocacy partners, the program will also work to encourage their members to submit their experiences through YoursTrulyPDP.com.
Those interested in learning more about Parkinson’s disease and its non-motor symptoms, and in sharing their experiences, are encouraged to visit YoursTrulyPDP.com. There, members of the Parkinson’s disease community can submit their story for the opportunity to be recorded by StoryCorps and have their story preserved in StoryCorps’ national archive.
About Parkinson’s Disease and Parkinson’s Disease Psychosis
Parkinson’s disease is a progressive nervous system disorder that affects about one million people in the United States.1,5 The signs and symptoms can vary with people experiencing both motor symptoms and non-motor symptoms such as hallucinations (seeing, hearing, or experiencing things that others don’t) and delusions (false beliefs).2,7 Physicians may refer to these Parkinson’s-related hallucinations and delusions as Parkinson’s disease psychosis.7 Around 50 percent of people living with Parkinson’s may experience hallucinations or delusions during the course of their disease.2 Non-motor symptoms, as a whole, can be more troublesome than motor symptoms, in terms of quality of life.8 Parkinson’s disease psychosis may add to the burden of caring for a loved one with Parkinson’s disease.9,10
About Yours, Truly
Yours, Truly is a national program that centers on the power of storytelling to increase understanding of the non-motor symptoms associated with Parkinson’s disease, such as hallucinations and delusions. By recording stories and highlighting shared experiences, the goal of Yours, Truly is to provide a unique forum that helps to elevate the patient and caregiver voice while empowering people to seek the support they need. Visit YoursTrulyPDP.com to learn more about the program, listen to participant stories, and access event and informational resources.
About Acadia Pharmaceuticals
Acadia is trailblazing breakthroughs in neuroscience to elevate life. 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 commercialized 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, and cognition and neuropsychiatric symptoms in central nervous system disorders. For more information, visit us at www.acadia-pharm.com and follow us on LinkedIn and Twitter.
Founded in 2003 by Dave Isay, StoryCorps has given more than 551,000 people of all backgrounds and beliefs, in thousands of towns and cities in all 50 states, the chance to record interviews about their lives. The organization preserves the recordings in its archive at the American Folklife Center at the Library of Congress, the largest single collection of human voices ever gathered, and shares select stories with the public through StoryCorps’ podcast, NPR broadcasts, animated shorts, digital platforms, and best-selling books. These powerful human stories reflect the vast range of American experiences, wisdom and values; engender empathy and connection; and remind us how much more we have in common than what divides us. For more information, please visit storycorps.org.
1 Parkinson’s Disease Foundation. What is Parkinson’s disease? Retrieved from https://www.parkinson.org/Understanding-Parkinsons/Statistics. Accessed March 2021.
2 Forsaa EB, Larsen JP, Wentzel-Larsen T, et al. A 12-year population-based study of psychosis in Parkinson’s disease. Arch Neurol. 2010;67(8):996-1001.
3 Fénelon G, Mahieux F, Huon R, Ziégler M. Hallucinations in Parkinson’s disease: prevalence, phenomenology and risk factors. Brain. 2000;123(Pt4):733-745.
4 StoryCorps. StoryCorps Annual Report 2020. Retrieved from https://storycorpsorg-staging.s3.amazonaws.com/uploads/StoryCorps_Annual_Report_2020_Final_V4-613a1ba454dad-613a1ba454dae.pdf.
5 Postuma RB, Berg D, Stern M, et al. MDS clinical diagnostic criterial for Parkinson’s disease. Mov Disord. 2015;30(12):1591-1601.
6 Chaudhuri KR, Prieto-Jurcynska C, Naidu Y, et al. The nondeclaration of nonmotor symptoms of Parkinson’s disease to health care professionals: an international study using the nonmotor symptoms questionnaire. Mov Disord. 2010;25:704-9.
7 Ravina B, Marder K, Fernandez HH, et al. Diagnostic criteria for psychosis in Parkinson’s disease: report of an NINDS, NIMH work group. Mov Disord. 2007;22(8):1061-1068.
8 Martinez-Martin P, Rodriguez-Blazquez C, et al. The Impact of Non-Motor Symptoms on Health-Related Quality of Life of Patients with Parkinson’s Disease. Mov Disord. 2011;26(3):399-406.
9 Schrag A, Hovris A, et al. Caregiver-burden in parkinson’s disease is closely associated with psychiatric symptoms, falls, and disability. Parkonism and Related Disorders. 2006;12:35-41.
10 Aarsland D, Bronnick K, Ehrt U. et al. Neuropsychiatric symptoms in patients with Parkinson’s disease and dementia: frequency, profile and associated care giver stress. J Neurol Neurosurg Psychiatry. 2007;78:36-42.