Join this 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). This call will include a brief introduction to the ARRE Foundation, an overview of resources helpful to newly diagnosed families, and informal discussion with parent volunteers.

Join pediatric pulmonologist Joshua Needleman, MD (Maimonides Health) and ASXL parent Laura Badmaev as they discuss preventative and proactive strategies for managing respiratory viruses in children with ASXL-related disorders.

Join the October Family Forum on the topic of “Exploring medical specialties that may help your child,” facilitated by parents Lauren O’Neil (ASXL1/Bohring-Opitz Syndrome) and Matina Trussell (ASXL2/Shashi-Pena Syndrome). This informal discussion will focus on different types of highly specialized medical fields and providers that you may not yet know about.

Join this informal discussion with veteran ASXL parents who will share their experiences parenting neurotypical children and a child with complex needs. This session will be facilitated by ASXL parents Joanna Bailey (ASXL3/Bainbridge-Ropers Syndrome) and Julie Lopez (ASXL1/Bohring-Opitz Syndrome). Julie’s adult daughter Alayna will also join the conversation to offer her perspective as a sibling growing up with a sister with complex needs. This session is intended for parents.

Join this 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). This call will include a brief introduction to the ARRE Foundation, an overview of resources helpful to newly diagnosed families, and informal discussion with parent volunteers.

Join Dr. Bianca Russell, a clinical geneticist and leading expert in ASXL-related disorders, for an explanation of what it means when your child's report says "variant of uncertain significance (VUS)" or "likely pathogenic variant." She will discuss why variants may be unclear, the evolving naming structure of ASXL-related disorders, and what your child's current diagnosis means in terms of finding where you and your family fit in the ASXL-related disorders community.

Join pediatric dentists Dr. Nancy Hijjawi and Dr. Charles Czerepak (Pine Dental Care) for a presentation on managing dental and oral care in children with complex medical needs, including the impact that oral health can have on other body systems.

Join this 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). This call will include a brief introduction to the ARRE Foundation, an overview of resources helpful to newly diagnosed families, and informal discussion with parent volunteers.