Join this informal monthly discussion led by veteran ASXL dads Bob Walsh, Daniel Ordower, and Justin Wienke about their journey as fathers to children with ASXL related disorders. This is a chance to connect with others who understand the unique challenges and rewards of raising a child with special needs. Share experiences, gain support, and build a community where your voice matters. This call is held monthly on the second Wednesday of the month from 8-9pm U.S. Eastern Time.

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 attorney and ARRE Foundation board member Michael Salad for a webinar on Special Needs Trusts. Learn how to protect your child’s financial future while maintaining eligibility for government benefits. Mike will share expert insights and practical guidance to help you navigate estate planning with confidence.

Join Sarah Scott, mom to Sammy and Gemma McKee, mom to Molly, for an informal chat about the joys and challenges of being a parent/caregiver to a child with Shashi-Pena Syndrome (ASXL2). The goal of this session is to promote connection amongst the Shashi-Pena Syndrome family community.

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 this informal monthly discussion led by veteran ASXL dads Bob Walsh, Daniel Ordower, and Justin Wienke about their journey as fathers to children with ASXL related disorders. This is a chance to connect with others who understand the unique challenges and rewards of raising a child with special needs. Share experiences, gain support, and build a community where your voice matters. This call is held monthly on the second Wednesday of the month from 8-9pm U.S. Eastern Time.

Join ARRE Foundation Executive Director Amanda Johnson and organizational leaders for an inside look at what’s next for the ASXL community. Hear about the ARRE Foundation’s 2025 goals, research strategy, and the latest progress in ASXL-related disorder research, along with exciting upcoming initiatives designed to drive progress toward treatments and improve care for families worldwide.

Join Smita S. Joshi, M.S., CCC-SLP and Stefani Wade, M.S., CCC-SLP, pediatric feeding specialists from Assential Therapies Inc., to discuss navigating feeding challenges. Learn the process of swallowing and complex relationships between swallowing, breathing, and the digestive system. Discuss the role of a multidisciplinary team and setting up mealtime expectations.

Join DEE-P Connections for an update on The Inchstone Project which is working to make sure that there are assessments to measure the inchstones, not milestones, of progress our loved ones who are profoundly impacted by rare diseases make.

Join Sarah Scott, mom to Sammy and Amanda Scheirer, mom to Connor, for an informal chat about the joys and challenges of being a parent/caregiver to a child with Shashi-Pena Syndrome (ASXL2). The goal of this session is to promote connection amongst the Shashi-Pena Syndrome family 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 monthly discussion led by veteran ASXL dads Bob Walsh, Daniel Ordower, and Justin Wienke about their journey as fathers to children with ASXL related disorders. This is a chance to connect with others who understand the unique challenges and rewards of raising a child with special needs. Share experiences, gain support, and build a community where your voice matters. This call is held monthly on the second Wednesday of the month from 8-9pm U.S. Eastern Time.

Join Dr. Vandana Shashi for a presentation to parents and caregivers about the latest findings on Shashi-Pena Syndrome, as featured in the new, comprehensive GeneReviews article. This is a rare opportunity to learn directly from one of the experts who identified the syndrome, gain deeper insights into current research, and connect with others in our ASXL2 community.

Join Dr. Bianca Russell, a clinical geneticist and leading expert in ASXL-related disorders, and the team that runs the ASXL-Related Disorders Natural History Study at UCLA. This is an open meeting for the ASXL community to share feedback and ask questions about the direction of this study that is the cornerstone of clinical research efforts in ASXL-related disorders.

Join Sarah Scott, mom to Sammy and Gemma McKee, mom to Molly, for an informal chat about the joys and challenges of being a parent/caregiver to a child with Shashi-Pena Syndrome (ASXL2). Please join us for laughs, stories among friends and maybe a few tears.  The goal of this session is to promote connection amongst the Shashi-Pena Syndrome family community.

Join this informal discussion led by veteran ASXL dads Bob Walsh, Daniel Ordower, and Justin Wienke about their journey as fathers to children with ASXL related disorders. This is a chance to connect with others who understand the unique challenges and rewards of raising a child with special needs. Share experiences, gain support, and build a community where your voice matters.

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.

DIRFloortime® is a therapeutic approach that emphasizes connection over compliance. A DIR trained provider prioritizes sensory regulation and scaffolds supports so the child can begin to interact with family members, teachers, peers, etc in increasingly more complex and meaningful ways. DIR views relationships as the catalyst for progress in all areas of development. When regulated and meaningfully engaged, a child is better able to take in information and learn new skills. Join occupational therapists Toni Tortora, MS, OTR/L and Brenna McNamee, MS, OTR/L for an introduction to DIR and from ASXL parent Jamie Ordower for first-hand experience.

Join ARRE Foundation staff members Amanda Johnson and Sarah Scott for an information session and workshop on Friday, November 15 from 2-3pm U.S. Eastern Time to learn more about hosting a GivingTuesday fundraiser.

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 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 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 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.