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.
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.
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.
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.
Acadia Pharmaceuticals Inc.