ARRE Foundation

Accessibility upgrade, unlocked! Thanks to a product donation from Youth Crews, we were able to stock our accessible changing table at the ASXL Family Conference with trial-size diaper packs to go along with it.

We know it's hard to find an accessible changing station for big kids and adults with disabilities, so we built one at the conference. How could it possibly be better? Add diapers in sizes between the standard baby sizes and the adult sizes insurance provides — which is exactly what Youth Crews helped make possible with their diapers in sizes 9, 10, and 11.

Thank you, Youth Crews, for thinking beyond "one-size-fits-all" to meet ASXL families where they actually are. 💛

Our 2026 ASXL Research Symposium is officially underway! It's so incredibly exciting to welcome everyone, and we cannot wait to see what comes from so many great minds collaborating and discussing the future of ASXL-related disorder research.

This guide highlights key factors and important considerations for healthcare professionals involved in the care of individuals with ASXL-related disorders (Bohring-Opitz Syndrome, Shashi-Pena Syndrome, and Bainbridge-Ropers Syndrome), with emphasis on symptom management, learning and development, and coordination of care.

Learn more: https://bit.ly/ASXLprovider-guide

We're so excited to welcome everyone to the 2026 ASXL Research Symposium and Family Conference! 💙

Behind the scenes, our team is hard at work putting the final touches on everything and preparing for an incredible few days.

We can't wait to see families, researchers, and clinicians from around the world come together in Ann Arbor. Safe travels to everyone making their way here.

For those who can't join us in person, virtual registration is still available: www.asxlconference.org/virtual