Acadia Pharmaceuticals Recognizes Rett Syndrome Awareness Month and Launches New Awareness Campaign, Rett Revealed
October 04 2022 - 7:30AM
Business Wire
– Acadia to light up its corporate headquarters
and provide onsite support and engagement at 15 local Rett
community events across the country
Acadia Pharmaceuticals today announced the launch of Rett
Revealed, a new awareness campaign that will highlight the lives of
Rett patients through a photo mosaic designed by Emily Shifflet, a
27-year-old eye-gaze artist living with Rett syndrome. In honor of
Rett syndrome awareness month, this October members of the
community are encouraged to submit their photos capturing
meaningful moments in their lives to RettRevealed.com to be
compiled into the unique mosaic art piece.
Ms. Shifflet creates artwork through a special software
installed on a communication device she operates with her eyes. Her
artwork has been exhibited at the Penn State Hershey Medical Center
and the Arc of Pennsylvania, with proceeds benefiting organizations
sponsoring Rett syndrome research.
“Although Emily lives with a condition that has silenced her,
she is still able to communicate and express herself through art,
and she is an example that people living with Rett syndrome can
have lives filled with purpose and creativity,” said Jenny
Shifflet, Emily’s mother. “Rett Revealed is a wonderful opportunity
for other Rett families to share their child’s special moments and
increase awareness that despite this devastating condition, there
are unique and strong people living fully with Rett syndrome. I
hope many will add their images to enhance the mosaic of Emily’s
piece and elevate our patient community.”
“Acadia stands with the Rett community and is committed to
raising awareness about Rett syndrome and advancing science to
address this acute area of unmet need,” said Bill Keller, Acadia’s
Vice President, Patient Advocacy and Industry Relations. “We
understand that whether you live with Rett syndrome, care for a
loved one or advocate on behalf of the greater community, every
journey is made up of unique moments. Through Rett Revealed and the
result of the final photo mosaic, we want to show that every person
impacted by Rett syndrome is unique, and their journey is too.”
Acadia will recognize Rett syndrome awareness month by lighting
its corporate headquarters purple. Acadia will also connect with
and lend support to Rett families at 15 locally organized events
across the country, organized by the International Rett Syndrome
Foundation and the Rett Syndrome Research Trust.
To participate in Rett Revealed, visit RettRevealed.com. To
learn more about Emily’s remarkable life as a young artist, please
visit her website, www.eyegazedesignsbyemily.com.
About Rett Syndrome
Rett syndrome is a rare genetic neurodevelopmental disorder that
occurs primarily in females following a near normal development in
the first two years of life.1,2 It is caused by mutations on the X
chromosome on a gene called MECP2.4 Occurring worldwide in
approximately one of every 10,000 to 15,000 female births and in
the United States impacts 6,000 to 9,000 patients.3 Children with
Rett syndrome experience a period of developmental regression
between 18-30 months of age, which is typically followed by a
plateau period lasting years to decades.1,2,4 Rett syndrome is
diagnosed based on clinical evaluation, typically by about three
years of age.2,5
A complex and multisystem disorder, Rett syndrome causes
profound impairment to central nervous system (CNS) function,
including loss of communication skills, purposeful hand use, gait
abnormalities, and stereotypic hand movements such as hand
wringing/squeezing, clapping/tapping, mouthing and washing/rubbing
automatisms.2 People living with Rett syndrome may also experience
a range of additional symptoms, such as gastrointestinal
complications, skeletal abnormalities, neuroendocrine
abnormalities, disruptive and anxiety-like behaviors, as well as
mood dysregulation and sleep disturbances.1 Currently, there are no
FDA-approved medicines for the treatment of Rett syndrome.
About Acadia Pharmaceuticals
Acadia is advancing 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 clinical-stage development
efforts are focused on treating the negative symptoms of
schizophrenia, Rett syndrome and neuropsychiatric symptoms in
central nervous system disorders. For more information, visit us at
www.acadia.com and follow us on LinkedIn and Twitter.
Forward-Looking Statements
Statements in this press release that are not strictly
historical in nature are forward-looking statements. These
statements include but are not limited to statements regarding the
timing of future events. These statements are only predictions
based on current information and expectations and involve a number
of risks and uncertainties. Actual events or results may differ
materially from those projected in any of such statements due to
various factors, including the risks and uncertainties inherent in
drug development, approval and commercialization. For a discussion
of these and other factors, please refer to Acadia’s annual report
on Form 10-K for the year ended December 31, 2021, as well as
Acadia’s subsequent filings with the Securities and Exchange
Commission. You are cautioned not to place undue reliance on these
forward-looking statements, which speak only as of the date hereof.
This caution is made under the safe harbor provisions of the
Private Securities Litigation Reform Act of 1995. All
forward-looking statements are qualified in their entirety by this
cautionary statement and Acadia undertakes no obligation to revise
or update this press release to reflect events or circumstances
after the date hereof, except as required by law.
References:
1Fu et al. Consensus guidelines on managing Rett syndrome across
the lifespan. BMJ Paediatrics Open. 2020;4:1-14. 2Neul JL, Kaufmann
WE, Glaze DG, et al. Rett syndrome: revised diagnostic criteria and
nomenclature. Ann Neurol. 2010;68(6):944-950. 3U.S. prevalence
estimate based on incidence rates from the National Institutes of
Health – National Institute of Neurological Disorders and Stroke.
4Amir RE, et al. Rett syndrome is caused by mutations in X-linked
MECP2, encoding methyl-CpG-binding protein 2. Nat Genet.
1999;23:185-188. 5Tarquinio. Age of Diagnosis in Rett Syndrome:
Patterns of Recognition Among Diagnosticians and Risk Factors for
Late Diagnosis. Pediatric Neurology. 2015;52:585-591.
View source
version on businesswire.com: https://www.businesswire.com/news/home/20221004005345/en/
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
Acadia Pharmaceuticals (NASDAQ:ACAD)
Historical Stock Chart
From Mar 2024 to Apr 2024
Acadia Pharmaceuticals (NASDAQ:ACAD)
Historical Stock Chart
From Apr 2023 to Apr 2024