Participate virtually in the ASXL Family Conference

Select sessions in the ASXL Family Conference program are open to virtual participation on Saturday, July 20 and Sunday, July 21. These sessions will also be recorded and made available after the conference in the ASXL Resource Library.

Fast facts for virtual participants:

  • You must register separately for each day of programming (Saturday, July 20 and Sunday, July 21); see below for schedule and registration details

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

  • There is a one-hour networking session for virtual participants on Saturday, July 20 from 12:30-1:30pm U.S. Eastern Time

  • Online participants will be able to ask questions along with the in-person audience using a question management app; instructions on how to ask and upvote 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

Saturday, July 20

Opening session
8:30-9:30am U.S. Eastern Time

Welcoming remarks
Laura Badmaev
Chair and founder, ARRE Foundation

How the ASXL community is preparing for clinical trials
Bianca Russell, MD
Clinical geneticist
UCLA

Natasha Ludwig, PhD
Clinical neuropsychologist
Kennedy Krieger Institute and Johns Hopkins School of Medicine

Complex and palliative care
9:30-10:30am U.S. Eastern Time

Heather Brown, MD
Kennedy Krieger Institute

Joanna Bailey
ASXL3/Bainbridge-Ropers Syndrome parent

Laura Badmaev
ASXL1/Bohring-Opitz Syndrome parent

Managing sleep disruptions
11:00am-12:00pm U.S. Eastern Time

Valerie Paasch, PhD
Kennedy Krieger Institute

Bob Walsh
ASXL3/Bainbridge-Ropers Syndrome parent

Matina Trussell
ASXL2/Shashi-Pena Syndrome parent

Virtual networking for families (virtual participants only)
12:30-1:30pm U.S. Eastern Time

Sunday, July 21

What we know and what we don’t know: The path to treatments
8:30-9:30am U.S. Eastern Time

David Bettoun, PhD
Chief Scientific Officer, ARRE Foundation

Stephanie Bielas, PhD
Morton S. and Henrietta K. Sellner Professor of Human Genetics
Associate Professor of Human Genetics
Associate Professor of Pediatrics
University of Michigan

Strategies to assess and manage challenging behaviors
9:30-10:15am U.S. Eastern Time

Julia O'Connor, PhD
Director of Day Treatment Services, Neurobehavioral Unit Outpatient Clinic
Assistant Professor, Department of Psychiatry and Behavioral Sciences
Kennedy Krieger Institute and John Hopkins School of Medicine

Care for developmental and behavioral issues related to gastrointestinal health in neurodevelopmental disabilities
10:45-11:30am U.S. Eastern Time

Andres Jimenez-Gomez, MD
Pediatric neurologist
Joe DiMaggio Children’s Hospital

Understanding cortical visual impairment (CVI)
11:30am-12:15pm U.S. Eastern Time

Rebecca Hommer
Education specialist
University of Maryland - Connections Beyond Sight & Sound

Conference closing
12:15pm-12:30pm U.S. Eastern Time

Amanda Johnson
Executive Director, ARRE Foundation

Thank you to our event sponsors!

  • Lauren and Jimmy Adams

    Platinum Sponsor ($10,000)

  • Leo's Lighthouse

    Gold Sponsor ($5,000)

  • Jamie and Daniel Ordower

    Gold Sponsor ($5,000)

  • Ultragenyx

    Partner ($500)

  • 4imprint One by One program

    Partner ($500)

  • Costco

    In-kind support