The good Cornellians can do: Laura Badmaev ’03

Laura Badmaev ’03 founded the ASXL Rare Research Endowment (ARRE) in 2018 after her son, Alex, was born with "an ultra-rare neurological syndrome, and was the first case diagnosed at Boston Children’s Hospital."

The organization works to increase understanding of disorders caused by the ASXL gene family, and improve care for those living with these conditions.

"It has been an uncertain journey with many challenges," Laura says. "Alex requires 1-on-1 support for all aspects of daily living and significant sub-speciality medical care for his multi-organ system issues."

In 2023, the organization's successes included four new research publications about ASXL-related disorders, supporting family enrollment in 12 research studies, creating a program to support newly-diagnosed families, and committing $60,000 to tools for reliable and accurate ASXL experiments—among many other accomplishments.

"In collaboration with our volunteers, board, and staff, we have significantly grown this organization and have strong momentum," Laura says. "Spreading awareness about ASXL syndromes, providing patient education and resources for families, and driving significant progress in research has been an incredibly rewarding experience."

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