Committees

Committees are volunteer-led teams dedicated to fulfilling core aspects of the ARRE Foundation’s mission. All committees report to the Board of Directors, have the support of ARRE Foundation staff, and may call on the expertise of the Medical and Scientific Advisory Board as needed.

Interested in joining a committee? Learn more

 

Family Education Committee

This committee is responsible for meeting the informational needs of families, including guiding the development of educational resources. This committee also liaises and coordinates with other ASXL-related organizations on collaborations and partnerships.

Lead: Vacant

 

ASXL Professional Network and Research Committee

This committee is responsible for the ARRE Foundation’s relationships with the professional community, including doctors, researchers and other allied health professionals, as well as the ARRE Foundation’s research grant portfolio.

Lead: Julie Lopez (ASXL1/Bohring-Opitz Syndrome parent)

Conference and Events Committee

This committee is responsible for the planning, project management and logistical coordination of in-person or virtual/hybrid events with input from other committees on educational content and assistance with securing speakers.

Lead: Angela Duquette (ASXL3/Bainbridge-Ropers Syndrome parent)

 

Finance Committee

This committee is responsible for all finance, accounting and compliance-related needs for the ARRE Foundation. The ARRE Foundation Board of Director treasurer leads this committee.

Lead: Daniel Ordower (ASXL1/Bohring-Opitz Syndrome parent)