ARRE Foundation Research Grants (Open Call)

Status

No open funding opportunities at this time. The ARRE Foundation may consider proposals outside of a call for applications that are exceptional and support strategic priorities.

Funding Strategy

The ARRE Foundation funds research through: 1. Open calls for research proposals meeting strategic priorities 2. Directed grants to support projects filling strategic research gaps

1. Clinical Research

• Studies defining how ASXL-related disorders appear and progress over time
• Critical groundwork for designing clinical trials
• Development of future care guidelines

2. Basic and Translational Science

• Research exploring underlying biology of ASXL genes
• Uncovering therapeutic targets
• Informing development of disease-modifying treatments

3. Research Infrastructure and Capacity

• Tools, networks, and data resources
• Expansion of global ASXL research community
• Acceleration of collaborative progress

Disease Focus

• Bohring-Opitz Syndrome (ASXL1)
• Shashi-Pena Syndrome (ASXL2)
• Bainbridge-Ropers Syndrome (ASXL3)

These are rare, multi-system neurodevelopmental disorders with estimated 500 individuals diagnosed globally and many more undiagnosed. Common features include developmental delay, intellectual disability, feeding difficulties, severe constipation, orthopedic complications, seizures, sleep disturbances, and challenging behaviors. Limited understanding of natural history and disease mechanisms exists, with no known treatments or standards of care.

Geographic Scope

• United States-based organization
• International collaboration welcomed

Funding Policies

Indirect/Overhead Costs:
As a steward of funds raised by families affected by ASXL-related disorders, no ARRE Foundation funds may be used to support indirect costs/overhead expenses. Acceptance of ARRE Foundation funds is contingent upon the recipient and their institution complying with this policy.

About the ARRE Foundation

• Established: 2018
• Type: Parent-led, nonprofit patient advocacy organization
• Mission: Accelerating research and improving care for individuals with ASXL-related disorders
• Leadership: Founded by parents; partners with clinicians, researchers, and families
• 501(c)(3) Status: Yes (Tax ID: 82-3890665)

Related Resources

• Research Roadmap
• ASXL Research Symposium
• Research tools and resources

How to Propose Research

Current Status: No open calls for proposals at this time.

Exceptional Proposals Outside Open Calls:

If you have a project that you believe warrants consideration and supports ARRE Foundation strategic priorities, you may submit a proposal for consideration outside of a formal call for applications.

Submission Process:
1. Contact Karen Ho, PhD to discuss your project idea
2. Proposals should demonstrate alignment with strategic research priorities:
- Clinical research
- Basic and translational science
- Research infrastructure and capacity
3. Submit proposal materials as directed by Dr. Ho

Key Requirements:

Project must support ARRE Foundation's strategic priorities

Institutions must comply with ARRE Foundation's indirect/overhead cost policy (no indirect costs allowed)

Strong scientific merit and potential impact on ASXL-related disorder research

Contact for Inquiries:
Karen Ho, PhD
Arrefoundation.org contact form