Participate virtually in the ASXL Family Conference

Select sessions in the ASXL Family Conference program are open to virtual participation on Saturday, June 27 and Sunday, June 28. Educational sessions will also be recorded and made available after the conference in the ASXL Resource Library.

Fast facts for virtual participants:

  • Registration is free with a suggested donation of $50 per person to the ARRE Foundation

  • Online participants will be able to ask questions along with the in-person audience using a question management app (Slido); instructions on how to ask questions will be provided during the meeting

  • All session times are listed in U.S. Eastern Time; use a time zone converter if you need to double check a time in your time zone

  • All sessions will be in English with the option to use live captioning in other languages using Zoom’s translation tools

  • An abbreviated schedule of the virtual program is provided below; please see the full ASXL Family Conference program for full session and speaker details

  • Important information about the Saturday workshops: Workshops on Saturday are assigned by ASXL-related disorder; please only attend the workshop that is relevant to your family’s diagnosis. Each workshop is highly interactive and uses a live polling tool. We strongly recommend joining from a desktop computer to watch the presentation with an additional mobile device to participate in polling.

Register
Make suggested donation

Saturday, June 27, 2026

Opening session
9:00-9:30am U.S. Eastern Time

Welcoming remarks
Sarah Scott
Family Education and Engagement Coordinator, ARRE Foundation

The power of a rare disease community
Pangkong Fox, PhD
CACNA1A Foundation

The path to treatments: Fireside chat with the ARRE Foundation’s Medical and Scientific Advisory Board
9:30-10:30am U.S. Eastern Time

Moderator: Karen Ho, PhD
ARRE Foundation

Panelists: Valerie Arboleda, MD, PhD (UCLA); Stephanie Bielas, PhD (University of Michigan); Eric Conway, PhD (University College Dublin); Rob Illingworth, PhD (University of Edinburgh); Natasha N. Ludwig, PhD (Kennedy Krieger Institute and Johns Hopkins School of Medicine); Bianca Russell, MD (UCLA); Wen-Hann Tan, BMBS (KK Women’s and Children’s Hospital Singapore; Boston Children’s Hospital)

Communication in the context of neurodevelopmental diversity
11:00am-12:00pm U.S. Eastern Time

Celina Cerf, MD, SLP
Kennedy Krieger Institute

Workshop: “What’s missing from this list?” family crowdsourcing
Time assigned by disorder; see schedule below

You know your child better than anyone and some of what you've observed may not yet be in the medical literature. In this interactive session led by ARRE Foundation staff, families will help build a more complete picture of the symptoms, features, and experiences across ASXL-related disorders, including what's working (and what isn't) when it comes to medications and treatments. Your input will directly shape future family resources and help guide where research goes next.

Please only attend the workshop that is relevant to your family’s diagnosis. Each workshop is highly interactive and uses a live polling tool. We strongly recommend joining from a desktop computer to watch the presentation with an additional mobile device to participate in polling.

  • 1:00-2:00pm - ASXL2/Shashi-Pena Syndrome families only

  • 2:30-3:30pm - ASXL1/Bohring-Opitz Syndrome families only

  • 4:00-5:00pm - ASXL3/Bainbridge-Ropers Syndrome families only

Sunday, June 28, 2026

Remembrance ceremony
8:00am-8:30am

Gastrointestinal and motility challenges in neurodevelopmental disorders
9:00-10:00am U.S. Eastern Time

Alejandro Velez Lopez, MD
University of Michigan

Epilepsy: From the basics to the complex
10:30-11:30am U.S. Eastern Time

Laurel Reed, MD
University of Michigan

Closing keynote: Together in the hard: Supporting each other in the ASXL community
11:30am-12:15pm U.S. Eastern Time

Amanda Griffith-Atkins, LMFT
Amanda Atkins Counseling Group

Thank you to our event sponsors!

  • Lauren and Jimmy Adams

    Gold Sponsor ($5,000)

  • Aligning Research to Impact Autism

    Gold Sponsor ($5,000)

  • The Ordower Family

    Gold Sponsor ($5,000)

  • Harley and Theresa Westfall

    Gold Sponsor ($5,000)

  • Leo's Lighthouse

    Silver Sponsor ($2,500)

  • 4imprint

    In-Kind Sponsor

  • Youth Crews

    In-Kind Sponsor

  • Harkla

    In-Kind Sponsor

  • Costco

    In-Kind Sponsor