SAN DIEGO--(BUSINESS WIRE)--Acadia Pharmaceuticals Inc. (Nasdaq: ACAD) today announced the establishment of the Rett Sibling Scholarship, sponsored by Acadia to shine a light on the impact of Rett syndrome on the entire family, including siblings. The program will award 10 scholarships of $5,000 to eligible siblings of individuals living with Rett syndrome for the 2024-2025 academic year.
“As a parent, the most important thing we can do is to ensure that our children feel supported no matter what challenges they may have to face,” said Matthew and Anna Heimburger, parents to Lucy, who lives with Rett syndrome, and her two older brothers, Fischer and Mason. “In our family’s experience, Lucy’s brothers have been integral to her ongoing care and they also inspire her to try new things, find new interests, and keep her engaged in the world around her. The Rett Sibling Scholarship recognizes siblings' commitment to their loved ones and is an important reminder that their dreams, too, belong at the forefront.”
“Through our work with the community, we know how Rett syndrome can impact whole families and create particularly unique circumstances for siblings of those living with this condition,” said Bill Keller, Acadia’s Vice President, Patient Advocacy and Industry Relations. “We've heard directly from these siblings that they often put their own needs aside to provide support for their loved ones. Acadia is excited to establish the Rett Sibling Scholarship to recognize the goals and aspirations of these unsung heroes, while providing meaningful opportunities for those looking to pursue their dreams through higher education.”
Applications are available now and can be submitted online through January 31, 2024, and will require a variety of materials such as academic transcripts, goals, family circumstances, and an original essay. Scholarship recipients will be notified in April 2024.
To learn more about the Rett Sibling Scholarship, or to apply, those interested are encouraged to visit RettScholarship.com. The scholarship process is fully administered by International Scholarship and Tuition Services, Inc. (ISTS), a firm that specializes in managing sponsored scholarship programs. Applications are reviewed and recipients are selected by an independent review committee.
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 4,500 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 approved therapies for hallucinations and delusions associated with Parkinson’s disease psychosis and for the treatment of Rett syndrome. Our clinical-stage development efforts are focused on treating the negative symptoms of schizophrenia, Prader-Willi syndrome, Alzheimer’s disease psychosis and neuropsychiatric symptoms in central nervous system disorders. For more information, visit us at www.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.
