-- 10 academic scholarships awarded supporting siblings of Rett syndrome patients

Acadia Pharmaceuticals Inc. (Nasdaq: ACAD) today announced that it has awarded 10 academic scholarships to eligible recipients of the first Rett Sibling Scholarship. The Rett Sibling Scholarship program, sponsored by Acadia, was established in 2023 to recognize the siblings of individuals with Rett syndrome. This year’s recipients will each receive $5,000 to pursue their goals in higher education for the 2024-25 academic school year.

“Families affected by Rett syndrome navigate many challenges, from medical care to balancing family, work and the daily activities of life and financial strain. Siblings often contribute by helping parents with caregiving and being a loving, supportive sibling, while also pursuing their own goals,” said Bill Keller, Acadia’s Vice President, Patient Advocacy and Industry Relations. “In establishing the Rett Scholarship program Acadia seeks to recognize their resilience and contributions while providing support in pursuit of their academic goals. This is another example of our ongoing commitment to understanding and supporting the needs of the Rett syndrome community.”

This year’s array of recipients includes students from Arizona, Arkansas, California, Colorado, New Jersey, New York, Oregon, Wisconsin, and Utah who are planning to pursue studies ranging from psychology to finance and medicine.

“The Rett Sibling Scholarship recognizes my personal aspirations, which are inspired by my relationship with my sister, and reminds me that siblings like me are not alone in our journeys,” said Kate Koblegarde, one of this year’s Rett Sibling Scholarship recipients. “I’m interested in social justice because I’ve seen all that my sister can do with support, as well as the barriers she faces. I know there is more work to be done to ensure everyone can pursue their own dreams.”

The Rett Sibling Scholarship

The Rett Sibling Scholarship, sponsored by Acadia Pharmaceuticals Inc., aims to shine a light on these often-unsung heroes of the Rett community. Submission and review of the applications is independently administered by International Scholarship and Tuition Services, Inc. (ISTS), a firm that specializes in managing sponsored scholarship programs.

To learn more about the Rett Sibling Scholarship and this year’s recipients, visit RettScholarship.com. Details regarding the 2025-2026 academic school year application period will be shared in the fourth quarter of 2024.

About Rett Syndrome

Rett syndrome is a rare, complex, neurodevelopmental disorder that may occur over four stages and affects approximately 6,000 to 9,000 patients in the U.S., with approximately 5,000 patients currently diagnosed according to an analysis of healthcare claims data.^1-4 A child with Rett syndrome exhibits an early period of apparently normal development until six to 18 months, when their skills seem to slow down or stagnate. This is typically followed by a duration of regression when the child loses acquired communication skills and purposeful hand use. The child may then experience a plateau period in which they show mild recovery in cognitive interests, but body movements remain severely diminished. As they age, those living with Rett may continue to experience a stage of motor deterioration which can last the rest of the patient’s life.³ Rett syndrome is typically caused by a genetic mutation on the MECP2 gene.⁵ In preclinical studies, deficiency in MeCP2 function has been shown to lead to impairment in synaptic communication, and the deficits in synaptic function may be associated with Rett manifestations.^5-7

Symptoms of Rett syndrome may also include development of hand stereotypies, such as hand wringing and clapping, and gait abnormalities.⁸ Most Rett patients typically live into adulthood and require round-the-clock care.^2,9

About Acadia Pharmaceuticals

Acadia is advancing breakthroughs in neuroscience to elevate life. For 30 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 FDA-approved drug to treat hallucinations and delusions associated with Parkinson’s disease psychosis and the first and only FDA-approved drug for the treatment of Rett syndrome. Our clinical-stage development efforts are focused on treating Prader-Willi syndrome, Alzheimer’s disease psychosis and multiple other programs targeting neuropsychiatric symptoms in central nervous system disorders. For more information, visit us at Acadia.com and follow us on LinkedIn and Twitter.

References

¹ Acadia Pharmaceuticals Inc., Data on file. RTT US Prevalence. March 2022.

² Fu C, Armstrong D, Marsh E, et al. Consensus guidelines on managing Rett syndrome across the lifespan. BMJ Paediatrics Open. 2020; 4: 1-14.

³ Kyle SM, Vashi N, Justice MJ. Rett syndrome: a neurological disorder with metabolic components. Open Biol. 2018; 8: 170216.

⁴ Acadia Pharmaceuticals Inc., Data on file.

⁵ Amir RE, Van den Veyver IB, Wan M, et al. Rett syndrome is caused by mutations in X-linked MECP2, encoding methyl-CpG-binding protein 2. Nat Genet. 1999; 23(2): 185-188.

⁶ Fukuda T, Itoh M, Ichikawa T, et al. Delayed maturation of neuronal architecture and synaptogenesis in cerebral cortex of Mecp2-deficient mice. J Neuropathol Exp Neurol. 2005; 64(6): 537-544.

⁷ Asaka Y, Jugloff DG, Zhang L, et al. Hippocampal synaptic plasticity is impaired in the Mecp2-null mouse model of Rett syndrome. Neurobiol Dis. 2006; 21(1): 217-227.

⁸ Neul JL, Kaufmann WE, Glaze DG, et al. Rett syndrome: revised diagnostic criteria and nomenclature. Ann Neurol. 2010; 68(6): 944-950.

⁹ Daniel C, Tarquinio DO, Hou W, et al. The changing face of survival in Rett syndrome and MECP2-related disorders. Pediatr Neurol. 2015; 53(5): 402-411.

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