Request for Basic Scientific & Clinical Research Proposals:


Download the Research Grant Submission Form now.

The ASXL Rare Research Endowment Foundation conducts biannual calls for research proposals. Applications are accepted on a continual basis for subsequent review occurring annually on November 5th and decisioning within 6 months of submission. One- or two-year grants will be awarded for various amounts of up to $100,000 per year.

Highest priority will be given to pilot projects to test new ideas about pathogenesis and therapeutics of ASXL congential syndromes and clinical research studies. Of particular interest to the AЯRE are studies related to respiratory illness, cyclic vomiting, seizures, sleep issues, and identification of treatments that impact the daily life of people with ASXL syndromes and their families. 

  • Cover page completed including title of proposal and name of principal investigator

  • One-page summary abstract of proposed research

  • Proposal, including hypothesis, background, research plan, and significance of the proposed research. Please ad here to the page limit guidelines on the top of each page.

  • NIH biosketch (

  • Description of the facilities available to carry out this study, which should be included in the Research Plan section.

  • One-page detailed budget: Indirect costs of up to 10% will be allowed (to be included in the total budget amount not to exceed $100,000 per year)

  • Name and approval signatures of the institution's financial officer who confirms the availability of equipment and facilities for the project and capacity for the investigator on the proposed study

  • Proposals involving human or animal subjects must be approved by institutional review boards before funding is released. Please include approval with proposal if possible.

Subject line to read: ARRE MM_20XX General RFP Submission (e.g., ARRE 09_2018 General RFP Submission)
File name to read: PI’s last name_MM_20XX_Gen_RFP.pdf. (e.g., Smith_09_2018_Gen_RFP.pdf)

AЯRE Medical & Scientific advisors will evaluate the relevance of the proposed research to the ASXL community.  Final funding decisions will be based on scientific merit, relevance and the suitability of the research with respect to the programmatic goals of AЯRE.

Questions should be directed to


Use of Funds

Grants are made only for the purposes stated in the award letter, and it is agreed that these grant funds will be used only for such purposes substantially in accordance with the budget submitted with the grant proposal. It is also understood that no substantial changes will be made from the approved budget or grant proposal without the AЯRE Foundation’s prior approval in writing.

Grantees agree to cooperate with the AЯRE Foundation to satisfy all of the requirements of an expenditure responsibility grant in accordance with U.S. Internal Revenue Code (IRC) and the regulations thereunder and agree to the terms outlined below:

All AЯRE Foundation grant funds received by the grantee institution must be maintained in a separate account dedicated to the charitable purposes described in the award letter. The AЯRE Foundation defines a separate account as a 1) a physically separate bank account restricted to the described charitable purposes or 2) a separate bookkeeping account (limited to the described charitable purposes) maintained as part of the Institution’s financial records.

• Grantees are required to maintain records of receipts and expenditures and make its books and records available to the AЯRE Foundation at reasonable times. Financial records with respect to a grant, along with any copies of annual reports submitted to the AЯRE Foundation, are required to be maintained by the awardees and their institution for at least four (4) years following the year in which all grant funds are fully expended.

• Grantees will repay any portion of the amount granted, which is not used for the purposes of the grant.

• Grantees agree not to use grant funds for any of the following restricted activities:

  • To carry on propaganda, lobbying, or otherwise to attempt to influence any legislation

  • In support of a candidate or party seeking elected office or to influence the outcome of any specific public election or to carry on, directly or indirectly, any voter registration drive

  • To make grants to individuals for travel, study or other similar purposes by such individuals (such as scholarships, fellowships or grants for research)

  • To make any grant to any other organization (other than to public charities or exempt operating foundations)

  • To undertake any activity for any purpose other than the charitable purposes

The AЯRE Foundation cannot make awards to individuals, groups, institutions or organizations originating in countries or nations under economic and trade sanctions by the U.S. Office of Foreign Assets Control (OFAC) or any other persons known to support terrorism or to have violated OFAC sanctions. In accepting an award from the AЯRE Foundation, the institution must assume responsibility to screen all individuals, entities or groups supported or associated with the grant against the OFAC sanctions lists


Reporting Requirements

The researcher must submit a progress report at the end of one year. This report must include a financial statement showing the expenditure of grant funds. Consideration for re- application for a subsequent grant will depend on satisfactory progress demonstrated in the eight month progress report. A final report must be submitted after twelve months and all unexpended funds must be returned to the AЯRE Foundation. 



Develop a research proposal to identify and test potential treatments/cure that will extend or improve the quality of life for ASXL congenital syndromes.

Subject line to read: ARRE MM_20XX Innovation RFP Submission (e.g., ARRE 09_2018 Innovation RFP Submission)
File name to read: PI’s last name_MM_20XX_Invn_RFP.pdf. (e.g., Smith_09_2018_Invn_RFP.pdf)