- Yours, Truly Debuts During National Family
Caregivers Awareness Month to Encourage the Parkinson’s Disease
Community to Preserve and Share Stories and Memories of Their Loved
Ones
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.
About StoryCorps
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.
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Media Contact: Acadia Pharmaceuticals Inc. Deb Kazenelson (818)
395-3043 media@acadia-pharm.com
Investor Contact: Acadia Pharmaceuticals Inc. Mark Johnson, CFA
(858) 261-2771 ir@acadia-pharm.com
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