Family financial scholarships

About the scholarship program

The application process closed on March 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

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, July 20

Families who do not meet these criteria are still encouraged to apply as additional grant funds may become available to support additional scholarships.

Scholarship requirements

The following are requirements of scholarship recipients:

  • Focus group participation on July 20: At least one primary caregiver in the scholarship recipient’s household must participate in the three discussion-based focus groups on Saturday, July 20. These focus groups are part of the ASXL Family Conference programming. The focus groups will gather additional family input on the topics of gastrointestinal-related concerns, neurodevelopment (cognition/intellectual disability and communication), and behavioral dysregulation (aggressive behavior, self-injury, and other unwanted behaviors). 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 30: All accepted scholarship recipients must participate in a 30-minute orientation session with ARRE Foundation staff to be scheduled at a time that works for you before April 30. This is to ensure you understand all the program requirements and to answer any questions you might have about attending the ASXL Family Conference.

  • Acceptance of award by April 30: All accepted scholarship recipients must formally accept their award by Tuesday, April 30. Failure to formally accept will result in forfeiture of your scholarship, which will then be awarded to a waitlisted family.

Key dates

  • February 15: Applications open

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

  • April 1: Applicants are notified of their acceptance status (accepted or waitlisted)

  • By April 30: 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. You can preview the full scholarship application (PDF) as you prepare your responses. Please have the following information available before you begin the online application:

  • Genetic testing reports for each affected individual in your family (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

  • 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 after the conference by check (US recipients) or wire transfer (non-US families) unless otherwise arranged.

  • 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 30th which is the deadline to accept or decline your award if you are selected for a scholarship.

  • Programming for the ASXL Family Conference begins the afternoon of Friday, July 19 and continues through the morning of Sunday, July 21. However, there are important research opportunities available for families to participate in on Thursday, July 18 and Friday, July 19. If you are interested in participating in research studies, please plan to arrive on Thursday, July 18 or Friday, July 19. You can start the process of participating in a research study now by taking our interest survey.

  • 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.