For full conference session information, please visit the AXYS 2023 Virtual Family Conference registration page on the Zoom Events platform.
When visiting the above linked page, scroll down and you will see the tabs named “Sessions,” “Speakers,” and “Sponsors.” There you can search for sessions by keyword and/or filter them by date, X/Y variation, or target audience. Click/tap on a session for speaker information and a description. Please note that the agenda is still being updated and all agenda information is subject to change.
For those that have registered: from the conference lobby, go to the Sessions tab and bookmark sessions that interest you to build your own custom Agenda! You can do this by clicking the 
icon. Sessions that you bookmark will be added to the schedule that can be viewed by going to the Agenda tab. Click here for a video tutorial!
Personalize Your Conference Agenda
Agenda Overview
Times are in Eastern Daylight Time (U.S. and Canada)
Updated: 5/31/2023
Opening Celebration
XXY Welcome Open House Drop in Session
Hosts: Dalene Basden | David Fox | Matt McKeon | David Wright
XYY Welcome Open House Drop in Session
Host: Silvia Mann
Trisomy X Welcome Open House Drop in Session
Hosts: Hannah Acevedo | Carrie Curtis
XXYY Welcome Open House Drop in Session
Hosts: Gail Decker | John Sloss
XXXY and others Welcome Open House Drop in Session
Host: Jenn Chapdelaine
Mosaic Welcome Open House Drop in Session
Host: Stefan Schwarz
Bienvenidos Hispanohablantes
Hosts: Hannah Acevedo | Silvia Mann
Mid Atlantic (PA, NJ, DE, MD, DC, VA, WV) Welcome Session
Hosts: Matt McKeon | Stefan Schwarz
New England Welcome Session
Hosts: Dalene Basden | Jenn Chapdelaine | Andrea Millett
NY Tri State and Upstate NY Welcome Session
Hosts: Carrie Riby | Avrin Slatkin
Southeastern (GA, FL, AL, MS, TN) US Welcome Session
Hosts: Dorothy Boothe | Sharron Close
Midwest Welcome Session
Host: Carol Meerschaert
Rocky Mountain Welcome Session
Host: Rob Lee
West Coast Welcome Session
Host: Hannah Acevedo
First Time Attendee Check-in Session
Updates from the eXtraordinarY Babies Study – 290 infants with a prenatal diagnosis of sex chromosome trisomy (XXY, Trisomy X, XYY) and XXYY
Speakers: Nicole Tartaglia, MD, MS | Shanlee Davis, MD, PhD | Jennifer Janusz, PsyD | Susan Howell, MS, MBA, CGC
Anxiety in Children and Adolescents with X&Y Chromosome Variations – Symptoms from early childhood to adolescence and considerations for treatments
Speakers: Rebecca Wilson, PsyD | Megan Louderman, PhD | Caitlin Middleton, PsyD
Adult Curiosities & Consequences: Culpability and Defense Dilemmas for Individuals with X & Y Chromosome Variations
Speaker: Sharron Close, PhD
Exactly what do you mean by “developmental delay?” – Developing Developmental Milestone Charts for XXY, XYY, Trisomy X, and XXYY
Speakers: Nicole Tartaglia, MD, MS | Talia Thompson, PhD
Research Partnership: The GALAXY Registry
Speakers: Shanlee Davis, MD, PhD | Alexa Carl, MPH
Get Moving! Strategies for Stimulating Motor Skills and Physical Activity in Children with X&Y Chromosome Variations
Speakers: Shanlee Davis, MD, PhD | Syd Martin, MS, OTR
Let’s Chat: What you wish you knew earlier – A discussion for adults with X or Y variations
Speakers: Matt McKeon | Stefan Schwarz | David Wright
GALAXY Registry Office Hours
Hosts: Alexa Carl, MPH | Natalia Klamut, Research Coordinator
First Time Attendee Check-in Session
Gender Identity in Klinefelter Syndrome
Speaker: Tet Yap
Gender identity, gender questioning and gender dysphoria: Qualitative evidence to inform proposals for improved care for Klinefelter syndrome/XXY
Speakers: James Elander | Claire Harkin
Ask the doctor: Testosterone
Host: Alan Rogol, MD, PhD
Sibling chat
Host: Carol Meerschaert
Beyond Hormones: Other medical conditions and physical symptoms associated with X&Y variations
Speakers: Nicole Tartaglia, MD, MS | Shanlee Davis, MD, PhD
First Giggles to First Words
Speakers: Michele Chadrom-Martinez, MA, CCC-SLP
Let’s chat about IEPs and 504 plans
Speaker: Talia Thompson, PhD
GALAXY Registry Office Hours
Hosts: Alexa Carl, MPH | Natalia Klamut, Research Coordinator
Finding Self Acceptance
Speakers: Hannah Acevedo, MS, LEP, ABSNP, BCBA | Matt McKeon, MS, CCC-SLP
Temperament in Infants with X&Y Chromosome Trisomies: What we have learned from the eXtraordinarY Babies Study
Speaker: Megan Louderman, PhD
Social and emotional function in boys and teens with Klinefelter syndrome
Speaker: Allan Reiss, MD | Lara Foland-Ross, PhD | Andrea Joan Funtila, BS
Adults with Trisomy X Panel
Moderator: Hannah Acevedo, MS, LEP, ABSNP, BCBA | Panel: Katy Boulet | Anjuli Hurt | Andrea Millett | Kayla Zuis
Brain structure and function in boys and teens with Klinefelter syndrome
Speaker: Allan Reiss, MD | Lara Foland-Ross, PhD
Trisomy X: A Review and Care Update for Families and Health Care Providers
Speaker: Kristen Wigby, MD
Let’s chat about Confabulation: When your child does not seem to tell the truth
Host: Gail Decker
Scavenger Hunt
Host: Andrea Millett
Adults with XXY: Create a timeline of significant moments
Host: David Wright
First Time Attendee Check-in Session
Government Benefits
Speaker: Ginnie Cover, MSW
State of Fertility in X and Y Chromosomes Variations Individuals What You Should Know in 2023
Speaker: Hooman Sadri, MD, PhD
How we did it: Lessons from XXYY parents on how to get traction with clinicians and researchers for rare X and Y variations
Speakers: Gail Decker | John Sloss | Nicole Tartaglia, MD
GALAXY Registry Office Hours
Hosts: Alexa Carl, MPH | Natalia Klamut, Research Coordinator
Supplemental Needs: A Novel About X/Y Variations
Speaker: Ginnie Cover, MSW
Let’s Chat: Trisomy X Support App and Book for Teens
Host: Tanja Schulz-Hess
Jobs for disabled folks
Speaker: Randy Lewis
Profiles of XXY Entrepreneurs + Powerful Lessons Learned Along the Way
Host: David Fox
Dr. T’s 5 Main Areas to Consider When Deciding Whether to Start Treatments for Behavioral Concerns in X&Y Variations
Speaker: Nicole Tartaglia, MD, MS
Let’s talk about getting older
Host: TBD
Fireside Chat
Speakers: Carol Meerschaert | Erin Torres DNP, MSN, CRNP-PMH | AXYS Board of Directors
GALAXY Registry Office Hours
Hosts: Alexa Carl, MPH | Natalia Klamut, Research Coordinator
First Time Attendee Check-in Session
NIH Trisomy X Study: Jonathan and Erin will share info on the study and answer your questions
Hosts: Jonathan Blumenthal, MA | Erin Torres, DNP, MSN, CRNP-PMH
Treatments for Learning Disabilities in X&Y Chromosome Variations: What does research show really works?
Speaker: Jennifer Janusz, PsyD
Diabetes and X&Y Variations
Speaker: Andrea Mucci, MD
XXYY Focus Group
Hosts: Nicole Tartaglia, MD, MS | Talia Thompson, PhD | Joanna Dreyer, PhD
Apraxia in X&Y Chromosome Variations
Speaker: Jacqueline Frazier, MA, CCC-SLP
Gender and Sexual Orientation in Youth and Adults
Speaker: John Strang, PsyD
Top 5 Parent Concerns about Executive Functioning from the eXtraordinarY Kids Clinic: Practical Tips and Ideas to Help
Speakers: Jennifer Janusz, PsyD | Ashley Nguyen-Martinez, PsyD
XXY Gathering
XYY Gathering
Host: Silvia Mann
Trisomy X Gathering
Hosts: Hannah Acevedo | Carrie Curtis | Andrea Millett
XXYY Gathering
Hosts: Gail Decker | John Sloss
XXXY Gathering
Mosaic Gathering
Host: Stefan Schwarz
GALAXY Registry Office Hours
Hosts: Alexa Carl, MPH | Natalia Klamut, Research Coordinator
First Time Attendee Check-in Session
Autism and X&Y Variations – How do they overlap?
Speakers: Nicole Tartaglia, MD, MS | Rebecca Wilson, PsyD | Caitlin Middleton, PsyD
Understanding the Phenotypic Spectrum and Family Experiences of XYY: Important Considerations for Genetic Counseling
Speakers: Rachel H. Gore, ScM, CGC | Colleen Jodarski, MGC, CGC
Related Viewing:
Michael Setzer, ScM, CGC – Whole Genome Sequencing and Genetic Counseling for X&Y Variations at NIH from the AXYS 2021 Virtual Family Conference
Adults with Trisomy X
Host: Andrea Millett
Adults with XXY
Black Affinity Group
Hosts: Dalene Basden | Erin Torres
LGBTQ+ Affinity Group
XXYY Open House
Fireside Chat/Sendoff
Speakers: Carol Meerschaert et al