2019 ASXL Conference - DRAFT AGENDA

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Friday, July 19th

Family Day

  • Meet & Greet - Opportunities to connect with other ASXL families and break out by syndrome

  • Informational Workshops

  • ASXL Family Dinner

Professional Day (for Scientists and Researchers)

  • Genetics

  • Modulation of H2A Monouniquination and Targeting

  • Developmental Models and Mechanisms

  • Models to Investigate Clinical Features

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Saturday, July 20th

Medical Research & Family Day

Guest Presentations:

  • Sleep

  • Genetics

  • Neurology

  • Ears, Nose, & Throat

  • Gastroenterology

  • Endocrinology

  • Vision Impairments

  • Palliative Care

Focus groups

Share experiences on different subjects (e.g. seizures, feeding, speech) with specialist facilitators

Biobanking & Registries

  • Simons VIP & ASXL Registry - sample collection

  • Registry enrollment


  • Catered lunch for families and professionals

  • ASXL Family Dinner

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Sunday, July 21st


  • Fun activities for families, therapy dogs, etc.

  • Lunch

Preliminary List of Speakers:

Wendy Chung (Columbia - New York)

Rob Hevner (UCSD - California)

Tomek Cierpicki (University of Michigan - Michigan)

Kirin Nistala (Regeneron - New Jersey)

Rosanna Weksberg (Toronto - Canada)

Elena Ezhkova (Mount Sinai - New York)

Rob Klose (Oxford - UK)

Gemma Cavill (Northwestern - Chicago)

Jürg Müller (Germany)

Jonathan Lipton (Harvard)

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