ARRE Foundation

ARRE Foundation We support research and education to improve the lives of families living with ASXL syndromes.

Parents Amy Brady (Bainbridge-Ropers Syndrome), Kathleen Paden (Bohring-Opitz Syndrome), and Paula Phelps (Bohring-Opitz...
08/26/2026

Parents Amy Brady (Bainbridge-Ropers Syndrome), Kathleen Paden (Bohring-Opitz Syndrome), and Paula Phelps (Bohring-Opitz Syndrome) share their experiences with their children’s self-injurious behavior that includes self-injury, including hair pulling, biting, punching, and head banging. Their experiences range from occasional self-injury to pervasive self-injury. They discuss helpful equipment and management strategies for home, school, and in other social settings.

Learn more: https://bit.ly/managing-self-injuriousbehavior

Shelby Surfas, OTD, OTR/L, BCP and Winny Soenaryo, OTD, OTR/L, occupational therapists at the USC Center for Excellence ...
08/19/2026

Shelby Surfas, OTD, OTR/L, BCP and Winny Soenaryo, OTD, OTR/L, occupational therapists at the USC Center for Excellence in Developmental Disabilities, provide practical examples of how to support your sensory-seeking or sensory-avoiding loved one. This presentation was given at the 2022 ASXL Family Conference.

Learn more: https://bit.ly/sensory-supports

News for U.S. Bohring-Opitz Syndrome families: Bohring-Opitz Syndrome (ASXL1) has been added to the U.S. Social Security...
08/13/2026

News for U.S. Bohring-Opitz Syndrome families: Bohring-Opitz Syndrome (ASXL1) has been added to the U.S. Social Security Administration’s Compassionate Allowances program.

This can provide a faster path through the disability application process for individuals with Bohring-Opitz Syndrome and their families.

Learn more: bit.ly/4qcHSne

Occupational therapists Toni Tortora, MS, OTR/L and Brenna McNamee, MS, OTR/L give an introduction of DIRFloortime®, a d...
08/12/2026

Occupational therapists Toni Tortora, MS, OTR/L and Brenna McNamee, MS, OTR/L give an introduction of DIRFloortime®, a developmental approach that emphasizes relationships over compliance. Jamie Ordower adds her perspective as a parent of a child who has benefited from the DIRFloortime® approach.

Learn more: https://bit.ly/DIR-floortime

Join an informal, virtual conversation for parents and caregivers with a loved one who has been recently diagnosed with ...
08/11/2026

Join an informal, virtual conversation for parents and caregivers with a loved one who has been recently diagnosed with an ASXL-related disorder (ASXL1/Bohring-Opitz Syndrome, ASXL2/Shashi-Pena Syndrome, or ASXL3/Bainbridge-Ropers Syndrome). Welcome calls include a brief introduction to the ARRE Foundation, an overview of resources helpful to newly diagnosed families, and informal discussion with parent volunteers. Welcome calls are held every two months in English unless otherwise noted. For immediate support or for email support in other languages, please contact Sarah Scott at [email protected]. Register here: https://bit.ly/newlydiagnosed-sept26

Cortical visual impairment, which is also sometimes called cerebral visual impairment or CVI, is a disorder where the b...
08/05/2026

Cortical visual impairment, which is also sometimes called cerebral visual impairment or CVI, is a disorder where the brain is unable to accurately process what the eyes see. New evidence suggests that CVI may be fairly common individuals with ASXL-related disorders but is under-diagnosed. Rebecca Hommer, EdD, a Teacher of the Visually Impaired, gives an introduction to cortical visual impairment (CVI) in this presentation.

Learn more: https://bit.ly/understanding-CVI

Most traditional primary care physicians have neither the specific training nor the bandwidth to support the diverse spe...
07/29/2026

Most traditional primary care physicians have neither the specific training nor the bandwidth to support the diverse specialty medical needs of children with ASXL syndromes. Conversely, clinical specialists focus on only one specific area of care. However, a comprehensive palliative care approach can improve quality of life and care coordination, with some families describing it as an “absolute game changer.” Learn from Dr. Heather Brown and ASXL parents, Joanna Bailey (BRS) and Laura Badmaev (BOS) about complex and palliative care and the impact it can have on ASXL families.

Learn more: https://bit.ly/complex-pallativecare

Although there is still much to be learned about Bohring-Opitz Syndrome, the ASXL community of families, doctors, and re...
07/22/2026

Although there is still much to be learned about Bohring-Opitz Syndrome, the ASXL community of families, doctors, and researchers have learned and continue to learn many lessons about how to best manage symptoms and complications of Bohring-Opitz Syndrome. This guide describes how to help manage some of the most common symptoms of Bohring-Opitz Syndrome.

Learn more: https://bit.ly/livingwith-BOS

New GeneReviews published for Bohring-Opitz Syndrome (ASXL1)!The updated article brings together the latest clinical gui...
07/22/2026

New GeneReviews published for Bohring-Opitz Syndrome (ASXL1)!

The updated article brings together the latest clinical guidance, surveillance recommendations, and research findings to support the care of individuals with Bohring-Opitz Syndrome.

Co-authored by Dr. Bianca Russell, Amanda Johnson, and Dr. Wen-Hann Tan.

👉 Read more: bit.ly/3TOjRql

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