Family financial scholarships

About the scholarship program

Applications open January 15-February 15

The ARRE Foundation is excited to provide limited needs-based scholarships to support family participation in the ASXL Family Conference. The scholarship program is funded by the ARRE Foundation’s PCORI award and is specifically intended to support family participation in onsite research-related activities. The amount of each scholarship is anticipated to be $750 USD per family.

An overview of the scholarship program to help families attend the 2024 ASXL Family Conference (an updated video for 2026 is coming soon!)

Scholarship priorities

The scholarship program will prioritize support of families who:

  • Have a pathogenic variant in ASXL1, ASXL2, or ASXL3 as confirmed by genetic testing

  • Have financial need and/or identify with marginalized or underrepresented groups

  • Affirm their ability to participate in the discussion-based focus groups that are part of the ASXL Family Conference the afternoon of Saturday, June 27

Families who do not meet these criteria are still encouraged to apply.

Scholarship requirements

The following are requirements of scholarship recipients:

  • Focus group participation on Saturday, June 27: At least one primary caregiver in the scholarship recipient’s household must participate in the three discussion-based focus groups on Saturday, June 27. These focus groups are part of the ASXL Family Conference programming. The focus groups will gather additional family input on research project to assess the clinical severity of the ASXL-related disorders. Participation in other in-person research activities at the ASXL Family Conference is strongly encouraged of all family attendees.

  • Participation in an orientation session by April 15: All accepted scholarship recipients must participate in a 30-minute orientation session with ARRE Foundation staff. Several orientation sessions at various dates and times will be scheduled between March 15 and April 15 to meet attendee scheduling needs. This orientation session is to ensure you understand all the program requirements and to answer any questions you might have about attending the ASXL Family Conference before accepting your scholarship.

  • Acceptance of award by April 15: All accepted scholarship recipients must formally accept their award by Wednesday, April 15. Failure to formally accept will result in forfeiture of your scholarship, which will then be awarded to a waitlisted family.

Key dates

  • January 15: Applications open

  • February 15: Applications close at 11:59pm U.S. Eastern Time

  • March 15: Applicants are notified of their acceptance status (accepted or waitlisted)

  • By April 15: Accepted applicants must participate in a brief online orientation session and formally accept or decline their award

  • May 1: Waitlisted applicants are notified of their status

Preparing and submitting your application

The scholarship application will take approximately 15 minutes to complete. Please have the following information available before you begin the online application:

  • Genetic testing reports for each affected individual in your family; this document should indicate in which gene(s) variants were identified and how the testing laboratory classified their variant (pathogenic, likely pathogenic, or variant of uncertain significance) (document upload)

  • A brief written statement of why a scholarship would benefit your family (maximum of 150 words)

  • Your estimated arrival/departure dates

  • Who in your family is planning to attend the conference

  • Any past participation in research activities or ASXL Family Conferences

  • Your interest in participating in research activities at the ASXL Family Conference

  • If you have a Clinical Research ID (CRID) (you do not need to provide the CRID number)

To expedite your application, please ensure you have a CRID (2-3 minute process to enroll at thecrid.org) and your genetic test results are available to upload.

FAQs

  • Family financial scholarships are intended to subsidize the cost of attendance at the ASXL Family Conference. The amount per scholarship is anticipated to be approximately $750 USD per family. Families are responsible for additional costs not covered by the scholarship.

  • Scholarship payments will be made immediately after the conference via electronic funds transfer (US recipients) or wire transfer (non-US families) unless otherwise arranged. US recipients are required to complete a W-9 form.

  • No, only one scholarship application per family or household will be considered.

  • Please apply for a scholarship regardless of the type of variant your loved one has. Additional funds may become available to support additional scholarships beyond the original priority criteria.

  • Please apply for a scholarship even if you are not sure you can attend. However, your attendance plans must be certain by April 15th which is the deadline to accept or decline your award if you are selected for a scholarship.

  • The ASXL Research Symposium and Family Conference has multiple parts:

    • ASXL Community Celebration Dinner (Friday, June 26): Open to all

    • ASXL Family Conference (Saturday, June 27 and Sunday, June 28): Open to all; programming is designed for ASXL families and caregivers

    • Research study participation (Thursday, June 25-Sunday, June 28): Research appointments will be available throughout the conference dates; families interested in participating in research are encouraged to plan to arrive before the start of the family programming and schedule appointments on Thursday, Friday and/or through late afternoon on Sunday.

  • If your question relates to the ASXL Family Conference schedule, travel or accommodation, or participating in a research study, please ensure you have checked the website for the answer to your question. If you cannot find an answer or need additional support, please email us at info@arrefoundation.org.