-- Company creates 10 academic scholarships
supporting siblings in Rett syndrome community pursuing dreams in
higher education
-- Applications now available through January
31, 2024, for the 2024-2025 academic year
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.
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version on businesswire.com: https://www.businesswire.com/news/home/20231020301895/en/
Media Contact: Acadia Pharmaceuticals Inc. Deb Kazenelson (818)
395-3043 media@acadia-pharm.com
Investor Contact: Acadia Pharmaceuticals Inc. Al Kildani (858)
261-2872 ir@acadia-pharm.com
Acadia Pharmaceuticals Inc. Jessica Tieszen (858) 261-2950
ir@acadia-pharm.com
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