ASXL Family Conference program

Friday, July 18 - Sunday, July 21, 2024

Meet your people at the ASXL Family Conference! The ARRE Foundation’s ASXL Family Conference is an educational and social program for families and caregivers of individuals with ASXL-related disorders. The ASXL Family Conference includes educational sessions with medical professionals and parents, discussion groups, social events, and critical opportunities to participate in research studies.

Fast facts about the ASXL Family Conference:

  • The registration fee for the ASXL Family Conference is a “pay what you can” rate from $0-$50 per person. Registration is now open.

  • A Family Lounge is adjacent to the conference space and will be available for networking, space to take a break, and activities for siblings. Additional detail about the Family Lounge is forthcoming. Please note supervised childcare is not provided.

  • Kennedy Krieger Institute is a world-renowned medical and research institute that specializes in developmental and intellectual disabilities. The campus and the designated hotel are accessible to individuals with disabilities.

If you’re planning to attend or considering attending the ASXL Family Conference, please take our conference interest survey!

Schedule at a glance

Thursday, July 18, 2024

Friday, July 19, 2024

Saturday, July 20, 2024

  • All day: Research participation (by appointment and limited walk-in appointments)

  • 8:30am-5pm: Family education programming, lunch, focus groups, and networking

  • 5:30-7:00pm: Pizza & Movie Night

Sunday, July 21, 2024

Family education program agenda

Programming note: Parts of the ASXL Family Conference program are still in development

Saturday, July 20
Kennedy Krieger Institute Ashland Outpatient Center

Opening session
8:30-9:30am

  • Laura Badmaev

    ARRE Foundation

    Welcoming remarks

  • Natasha Ludwig, PhD

    Kennedy Krieger Institute and Johns Hopkins School of Medicine

    How the ASXL community is preparing for clinical trials

  • Bianca Russell, MD

    UCLA

    Clinical research updates

Complex and palliative care
9:30-10:30am

This session will explore complex care and palliative care can help you balance the unique needs of your child with the many specialists they see. Dr. Heather Brown, a palliative care specialist at Kennedy Krieger Institute, will provide an overview of what palliative care is and how to engage a palliative care team in your child’s care. Two ASXL parent panelists will also share their experiences incorporating complex and palliative care services into their child’s care plan. This session includes 30 minutes for questions for the panel.

  • Heather Brown, MD

    Kennedy Krieger Institute

    Palliative care: What it is, what it isn’t, and how a palliative care team can help your family

  • Parent panelist

    To be announced

  • Parent panelist

    To be announced

Managing sleep disruptions
11:00am-12:00pm

Why are sleep disturbances so common in ASXL-related disorders and how can you help everyone in your household get a better night’s sleep? Dr. Valerie Paasch, Director of Behavioral Sleep Services in the Sleep Disorder Clinic at Kennedy Krieger Institute, will provide an overview of why sleep disruptions are common in neurodevelopmental disorders. Two ASXL parent panelists will also share their strategies to help their children get better sleep. This session includes 30 minutes for questions for the panel.

  • Valerie Paasch, PhD

    Kennedy Krieger Institute

    Why sleep disruptions are common in neurodevelopmental disorders

  • Parent panelist

    To be announced

  • Parent panelist

    To be announced

Family focus group discussions
1:00-5:00pm

Caregivers are invited to participate in a series of three focus groups to help us better understand three areas of priority: gastrointestinal issues, neurodevelopment (cognition and communication), and behavioral dysregulation. Caregivers will be broken into smaller groups by disorder to discuss each topic.

  • Gastrointestinal issues

    Facilitated by Calliope Holingue, PhD, MPH

  • Neurodevelopment

    Facilitated by Natasha Ludwig, PhD

  • Behavioral dysregulation

    Facilitated by Julia O’Connor, PhD

Sunday, July 21
Residence Inn Baltimore at Johns Hopkins Medical Campus

Basic research update
8:30-9:15am

ARRE Foundation Executive Director Amanda Johnson will give an overview of the ARRE Foundation’s research strategy and our plans in the year ahead. Scientific Advisor Stephanie Bielas, PhD will also give a detailed overview of what we know about how the ASXL genes work and what we still need to discover about the ASXL genes to move us closer to finding a path to treatment.

  • Amanda Johnson

    ARRE Foundation

    Overview of the ARRE Foundation’s research strategy

  • Stephanie Bielas, PhD

    University of Michigan

    The ASXL genes: What we know about how they work and what we still need to learn

Strategies to assess and manage challenging behaviors
9:15-10:00am

  • Julia O'Connor, PhD

    Kennedy Krieger Institute and John Hopkins School of Medicine

    Director of Day Treatment Services, Neurobehavioral Unit Outpatient Clinic

    Assistant Professor, Department of Psychiatry and Behavioral Sciences

Care for developmental and behavioral issues related to gastrointestinal health in neurodevelopmental disabilities
10:30-11:15am

  • Andres Jimenez-Gomez, MD

    Joe DiMaggio Children’s Hospital

    Pediatric neurologist

Understanding cortical visual impairment (CVI)
11:15am-12:00pm

  • Rebecca Hommer

    University of Maryland - Connections Beyond Sight & Sound

    Education specialist

Conference closing
12:15pm-12:30pm