Grants
CSNK2A1 FOUNDATION PILOT GRANT PROGRAM 2026 - full applications by invitation only
CSNK2A1 Pilot Grant Program
The CSNK2A1 Foundation is pleased to announce the CSNK2A1 Pilot Grant Program, which will support one (1) investigator-initiated research project aimed at advancing the biological understanding of OCNDS and/or accelerating the discovery or development of therapeutic approaches.
This pilot grant is intended to generate high-impact preliminary data, support novel or underexplored approaches, and position investigators for future external funding.
Research Priorities:
The RFA is intentionally focused. Proposed projects must be clearly relevant to OCNDS and CSNK2A1 biology and align with one or more of the priority areas below. Community input has identified speech and communication, intellectual disability, sleep disturbances, and anxiety as high-priority symptom domains, and proposals that help advance understanding or treatment of these areas are encouraged.
Priority will be given to projects that address:
1. Disease mechanisms and variant-level biology
Studies that improve understanding of how pathogenic CSNK2A1 variants alter CK2 function, signaling pathways, or cellular phenotypes.
This may include, but is not limited to:
Functional characterization of patient-observed variants, including missense variants, truncations, or deletions
Integration of genetic variation with clinical, functional, or molecular data to identify meaningful phenotype patterns or subgroups within OCNDS
Variant interpretation approaches, including computational modeling, structural biology, phosphoproteomics, electrophysiology, or cellular assays
Use of patient-derived or engineered cellular or animal models
2.Biomarker discovery or validation
Identification or early validation of molecular, cellular, physiological, or digital biomarkers relevant to OCNDS disease activity, progression, or therapeutic response.
Biomarkers may be derived from:
Preclinical models
Patient-derived samples
Clinical or real-world data sources
Projects that support future clinical trial readiness are strongly encouraged.
3.Therapeutic approaches
Exploratory or proof-of-concept studies aimed at therapeutic development for OCNDS, including:
Drug repurposing or small-molecule screening
Gene-based or RNA-based therapeutic strategies
Pathway-targeted interventions informed by CK2 biology
Projects should articulate a clear translational rationale.
Applicants are encouraged, but not required, to leverage existing community resources such as patient registries, natural history data, or available model systems; for the full list, please visit: https://www.csnk2a1foundation.org/research-toolbox
Award Amount and Duration:
One award of $50,000 total costs
Project duration: up to 12 months
Indirect costs are not permitted.
Background:
Okur-Chung Neurodevelopmental Syndrome (OCNDS) is a rare autosomal dominant neurodevelopmental disorder caused by pathogenic variants in CSNK2A1, which encodes the alpha catalytic subunit of protein kinase CK2. CK2 is a ubiquitously expressed serine/threonine kinase with critical roles in neurodevelopment, cellular signaling, and synaptic function.
Individuals with OCNDS exhibit a broad and heterogeneous phenotype that may include global developmental delay, speech and motor impairments, hypotonia, intellectual disability, behavioral challenges, epilepsy, sleep disturbances, gastrointestinal issues, short stature, and other neurological features. To date, there are no disease-modifying treatments or cures for OCNDS, and clinical management remains supportive.
While substantial progress has been made in patient identification and natural history characterization, important gaps remain in our understanding of disease mechanisms, variant-specific effects, biomarkers, and therapeutic strategies. Addressing these gaps is essential for advancing clinical trial readiness and therapeutic development.
Eligibility:
Investigators holding a faculty-level appointment at an academic institution
Investigators in a senior position at a nonprofit research organization or foundation
International applicants are welcome
Early career investigators and postdoctoral fellows may apply, provided the application includes documented institutional and mentor support.
Full Application:
Full applications will be by invitation only following LOI review.
Full application instructions, required components, and review criteria will be provided to invited
applicants. Full application documents will be due by May 22, 2026.
Review Criteria
Applications will be evaluated based on:
Scientific rigor and feasibility
Relevance to OCNDS and CSNK2A1 biology
Potential to advance therapeutic development or clinical readiness
Innovation and significance
Investigator expertise and access to required resources
Likelihood of generating data that supports future funding
Full Application Due Date: Documents are to be uploaded no later than 8pm (ET) on May 22, 2026, via ONLINE FORM.
To Apply:
Step 1 - Please review the CSNK2A1 RESEARCH FOUNDATION 2025 PILOT GRANT PROGRAM RFA Guidelines.
Step 2 -Download and complete/review the forms below
Step 3 - Complete the Application Form on Submittable.
For any scientific inquiries regarding this grant please email Debbie Requesens
For any administrative inquiries regarding this grant please email psom-odcadmin@pobox.upenn.edu
CSNK2A1 FOUNDATION PILOT GRANT PROGRAM 2026
Deadline Extended to April 24, 2026
CSNK2A1 Pilot Grant Program
The CSNK2A1 Foundation is pleased to announce the CSNK2A1 Pilot Grant Program, which will support one (1) investigator-initiated research project aimed at advancing the biological understanding of OCNDS and/or accelerating the discovery or development of therapeutic approaches.
This pilot grant is intended to generate high-impact preliminary data, support novel or underexplored approaches, and position investigators for future external funding.
Research Priorities:
The RFA is intentionally focused. Proposed projects must be clearly relevant to OCNDS and CSNK2A1 biology and align with one or more of the priority areas below. Community input has identified speech and communication, intellectual disability, sleep disturbances, and anxiety as high-priority symptom domains, and proposals that help advance understanding or treatment of these areas are encouraged.
Priority will be given to projects that address:
1. Disease mechanisms and variant-level biology
Studies that improve understanding of how pathogenic CSNK2A1 variants alter CK2 function, signaling pathways, or cellular phenotypes.
This may include, but is not limited to:
Functional characterization of patient-observed variants, including missense variants, truncations, or deletions
Integration of genetic variation with clinical, functional, or molecular data to identify meaningful phenotype patterns or subgroups within OCNDS
Variant interpretation approaches, including computational modeling, structural biology, phosphoproteomics, electrophysiology, or cellular assays
Use of patient-derived or engineered cellular or animal models
2.Biomarker discovery or validation
Identification or early validation of molecular, cellular, physiological, or digital biomarkers relevant to OCNDS disease activity, progression, or therapeutic response.
Biomarkers may be derived from:
Preclinical models
Patient-derived samples
Clinical or real-world data sources
Projects that support future clinical trial readiness are strongly encouraged.
3.Therapeutic approaches
Exploratory or proof-of-concept studies aimed at therapeutic development for OCNDS, including:
Drug repurposing or small-molecule screening
Gene-based or RNA-based therapeutic strategies
Pathway-targeted interventions informed by CK2 biology
Projects should articulate a clear translational rationale.
Applicants are encouraged, but not required, to leverage existing community resources such as patient registries, natural history data, or available model systems; for the full list, please visit: https://www.csnk2a1foundation.org/research-toolbox
Award Amount and Duration:
One award of $50,000 total costs
Project duration: up to 12 months
Indirect costs are not permitted.
Background:
Okur-Chung Neurodevelopmental Syndrome (OCNDS) is a rare autosomal dominant neurodevelopmental disorder caused by pathogenic variants in CSNK2A1, which encodes the alpha catalytic subunit of protein kinase CK2. CK2 is a ubiquitously expressed serine/threonine kinase with critical roles in neurodevelopment, cellular signaling, and synaptic function.
Individuals with OCNDS exhibit a broad and heterogeneous phenotype that may include global developmental delay, speech and motor impairments, hypotonia, intellectual disability, behavioral challenges, epilepsy, sleep disturbances, gastrointestinal issues, short stature, and other neurological features. To date, there are no disease-modifying treatments or cures for OCNDS, and clinical management remains supportive.
While substantial progress has been made in patient identification and natural history characterization, important gaps remain in our understanding of disease mechanisms, variant-specific effects, biomarkers, and therapeutic strategies. Addressing these gaps is essential for advancing clinical trial readiness and therapeutic development.
Eligibility:
Investigators holding a faculty-level appointment at an academic institution
Investigators in a senior position at a nonprofit research organization or foundation
International applicants are welcome
Early career investigators and postdoctoral fellows may apply, provided the application includes documented institutional and mentor support.
Letter of Interest Instructions
All applicants must first submit a Letter of Interest (LOI) to be reviewed for consideration of a full application submission. Please visit our website to submit your LOI, which can also be found here.
Format for the 1‐page LOI:
Project title
Principal Investigator and institution
Overall goal of the project
Clear statement of relevance to OCNDS and this RFA
Brief background
Specific aims listed succinctly
High-level project timeline and requested budget
LOI Due Date: LOI document is to be uploaded no later than 8pm (ET) on APRIL 24 2026, via ONLINE FORM. Applicants will be notified via email with a decision regarding their LOI, which, if successful, will invite the applicant to submit a full application.
To Apply:
Please review the CSNK2A1 RESEARCH FOUNDATION 2025 PILOT GRANT PROGRAM RFA Guidelines.
Complete the Application Form on Submittable.
For any scientific inquiries regarding this grant please email Debbie Requesens
For any administrative inquiries regarding this grant please email psom-odcadmin@pobox.upenn.edu
2026 CDKL5 Pilot Grant Program Full Application (by invitation only)
The ODC and Loulou Foundation CDKL5 Pilot Grant Program provides a one‐year grant for $150,000.00 (total cost) to support research related to CDKL5 Deficiency Disorder (CDD). The number of awards is not fixed, and may vary.
Full Applications are Due Friday, March 27, 2026 by 5pm EST
To Apply:
Step 1 - Please review the "LOI Instructions and Review Procedure" section of the 2026 CDKL5 Program of Excellence Pilot Grant Program RFA Guidelines.
Step 2 - Download and complete/review the forms below:
Step 3 - Complete the Application Form on Submittable.
2026 CDKL5 Pilot Grant Program LOI
The ODC and Loulou Foundation CDKL5 Pilot Grant Program provides a one‐year grant for $150,000.00 (total cost) to support research related to CDKL5 Deficiency Disorder (CDD). The number of awards is not fixed, and may vary.
Letter of Intent (LOI) are Due Friday, February 27, 2026 by 5pm EST
To Apply:
Please review the "LOI Instructions and Review Procedure" section of the 2026 CDKL5 Program of Excellence Pilot Grant Program RFA Guidelines.
2. Complete the Letter of Intent (LOI) Application Form on Submittable.