ARRE Foundation Research Grants

Funding opportunity: Building the clinical research infrastructure for collaborative and longitudinal data collection efforts in ASXL-related disorders

Due date: December 15, 2024

Total funding amount: $60,000 per year for a maximum of 3 years ($180,00 total)

About this award

The ARRE Foundation is accepting research grant proposals to support and strengthen the infrastructure of clinical research studies in ASXL-related disorders at academic medical centers with histories of collecting clinical data in this population. The award amount is up to $180,000 over three years from January 1, 2025 to December 31, 2027.

Responsive proposals should address the following goals that are aligned to the ARRE Foundation’s strategic research plan to support the development of a central collaborative research hub for multi-disciplinary, multi-site studies that are centered on the needs and priorities of ASXL families:

Overall Project Goals (Years 1-3)

• Growth of productive research collaborations with other study sites (new study sites or renewal of relationships with existing study sites)

• Regular dissemination of the study’s efforts and successes as a collaborative hub for ASXL-related disorders research through publications and presentations

• Positioning the study for pursuit of longer term, larger scale funding (i.e. NIH or FDA funding)

• Exploration of the expansion of the study infrastructure to other sites

2025 Project Goals (Year 1)

• Development of a protocol and cadence for the routine collection and analysis of longitudinal data for the three ASXL-related disorders, including:

  • Developmental assessments

  • Annual standardized medical assessments (e.g. ClinGen Level 2 and Level 3 surveys)

• Development of a protocol and cadence for routinely updating and publicly disseminating the data and samples that are available to research collaborators (i.e. data dictionary and biological samples); investigators are encouraged to partner with the ARRE Foundation to support dissemination efforts through the ASXL research network

• Development of a protocol for the collection of data related to cause of death that could lead to additional insights about mortality in ASXL-related disorders

• Inclusion of other specific goals informed by the investigator’s clinical and research experience are encouraged

How to apply

Please send a written proposal including a budget to info@arrefoundation.org by December 15, 2024. There is no limit to the length of the proposal; however, proposals are encouraged to be concise and may be presented as bullet points. The proposal should address and include the following:

Part A:

• Background: A description of the investigator’s current clinical research efforts in ASXL-related disorders, including successes and challenges

• Project vision: A description of the investigator’s vision for growth and development of this study over three years

• Family responsiveness: A description of how the project will be responsive to the ASXL family community’s priorities and needs

Part B:

• Identification and description of the project aims and measurable goals for the grant period, including a timeline for project milestones and deliverables

  • Year 1 (2025): Please include a detailed description and timeline that are responsive to the 2025 Project Goals (Year 1) listed above

  • Years 2-3 (2026-2027): Please include a broad description of the aims and goals that align to the vision described in Part A

• Budget and budget justification

• Please include a detailed budget for Year 1 (2025) and an anticipated budget for Years 2 (2026) and 3 (2027) that aligns to the vision described

Reporting and milestones

An annual grant report will be due to the ARRE Foundation by September 15 of the funding year reporting on progress for that year and with a proposal for milestones in the subsequent funding year (i.e. a report on Year 1 progress with a proposal for Year 2 milestones is due September 15, 2025). The recipient is encouraged to work collaboratively with the ARRE Foundation, ASXL family community, and ASXL research community to develop these goals and milestones based on the emerging needs and latest insights in the quickly changing ASXL research landscape. 

Funds will be disbursed annually ($60,000 per year). Year 2 and Year 3 funding are contingent on the successful meeting of goals, milestones, and deliverables from the previous funding year.  

Institutional overhead policy

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.

Additional information

Questions may be addressed to Amanda Johnson at amanda@arrefoundation.org