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Our Foundation


To support research that will increase our understanding of the ASXL genes and to improve the treatment of individuals with congenital ASXL mutations.


Drive evidence-based research and information distribution that will enable ASXL-impacted children to have an improved quality of life. 

  • Prevent: Improve medical and overall management of care through early identification of health risks and optimization of treatments

  • Improve: Use evidence-based research to justify medical needs, therapies, services, and equipment needs.

  • Inform: Enable caregivers and providers to be effective advocates


To accomplish this mission, the AЯRE Foundation team will embody these values and act in the best interests of ASXL affected individuals and their families.

Integrity: Conduct operations in a manner that is honest, transparent, and ethical. Demonstrate good stewardship of the resources bequeathed to AЯRE .

Respect: Value and listen to all individuals for their diverse backgrounds, experiences, styles, approaches, and ideas.

Community: Collaborate with ASXL families, friends, advisors, doctors, scientists, and other partners to build relationships and maximize accomplishments.

Name origins

AЯRE in Spanish means Get up! Giddy up! Let’s go! and highlights the urgency needed toward research, finding treatments, and methods to drastically improve the quality of life for ASXL families.

The AЯRE logo models the nautical flag that means 'I want to communicate with you' and includes a mutated, backwards “Я”.