Upcoming webinars and events
The ARRE Foundation hosts virtual and in-person educational and networking events for ASXL families. Some programs are recorded and later made available on demand in the ASXL Resource Library. All programs are conducted in English unless otherwise noted. Please see the ASXL Research Symposium and Family Conference page for information about our flagship events.
Shashi-Pena Syndrome (ASXL2) GeneReviews explained with Dr. Vandana Shashi
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.
Understanding unclear genetic test results: variants of uncertain significance (VUS) and likely pathogenic variants in ASXL-related disorders
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.
Dental and oral care for complex kids
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.
Webinar: Navigating feeding challenges
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.
Newly Diagnosed welcome call - February
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.
Family Forum: Transitioning from pediatric to adult care
Join ASXL parents Melissa Richards and Lori Verlinghieri as they share their journeys through the challenges of transitioning from pediatric to adult care. Melissa and Lori will offer valuable insights, from managing health concerns to tackling the necessary paperwork, highlighting key steps to help you continue providing the best support for your child.
Webinar: Planning for the future: understanding special needs trusts
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.
Open Steering Committee meeting: ASXL-Related Disorders Natural History Study
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.
Family Forum: ASXL2 Shashi-Pena Syndrome family chat
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.
Family Forum: ASXL Dad Chat
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.
Newly Diagnosed welcome call - December
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.
Exploring DIR Floortime: A relationship-based therapeutic approach
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.
GivingTuesday information session and workshop
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.
Family Forum: Supporting the siblings of kids with complex needs
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.
Family Forum: Exploring medical specialties that may help your child
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.
Proactive strategies for managing respiratory virus season
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.
Newly Diagnosed welcome call - October
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.