News and updates from the ARRE Foundation

From Sunday, October 19 to Monday, October 20, 2025, the ASXL Rare Research Endowment (ARRE) Foundation will host the ASXL Research Symposium at Simmons University in Boston, Massachusetts.

After Frank and Mikaila Schmidt’s son Hudson passed away, they looked for ways to carry his memory forward and support other families facing the same rare diagnosis. Out of that desire to make a difference, Hudson’s Handlebar Heroes was born—a 200-mile cycling fundraiser. With support from friends, family, and their wider community, the Schmidts raised more than $19,000 for ASXL-related disorder research.

Dr. Rob Illingworth and Dr. Valerie Arboleda join the ARRE Foundation’s Medical and Scientific Advisory board. Their expertise brings strength to our translational science efforts to help bridge foundational scientific discovery with future therapeutic possibilities.

Many developmental delays, medical complexities, and neurological differences have a genetic cause. Yet too often, families are unaware that genetic testing is available—or don’t know how to access it. Genetic Testing Action Day on July 25 encourages families to talk with their child’s doctor about genetic testing.

A new paper published by the Inchstone Project marks a turning point in how future clinical trials can better reflect—and include—the most severely affected individuals with developmental and neurogenetic disorders, including ASXL-related disorders.

ARRE Foundation Founder and Chair, Laura Badmaev, and her son Alex—who has Bohring-Opitz Syndrome (ASXL1)—will travel to Washington, D.C. this June to represent the ASXL community at Family Advocacy Day.

We’re launching something simple but powerful: the ASXL Census. If you’ve never heard the word “census” outside of a government survey, you’re not alone. But in rare disease communities like ours, a census can be one of the most important tools we have to drive change. Learn more about what the ASXL Census is, what it isn’t, and how it can drive research forward.

For individuals with ASXL-related disorders, identifying reliable biomarkers is key to preparing for future clinical trials. But what is a biomarker? We answer this question in our latest blog post and share two exciting studies that are helping move research forward.