ARRE Foundation Research Grants (Open Call)

ARRE Foundation Research Grants

Funder: ASXL Rare Research Endowment (ARRE) Foundation

Website: https://arrefoundation.org/for-professionals/research-funding/

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

Strategic Research Priorities

Key Areas of Investment:

#### 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)

Contact Information

For Research Funding Inquiries:

Karen Ho, PhD
Email: Contact through form at arrefoundation.org

General ARRE Foundation Contact:
PO Box 102
Gorham, ME 04038
Email: info@arrefoundation.org
Phone: 767-123 (incomplete number in source)

Related Resources

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