Conference Agenda

(Last updated 3-8-19)

Please be aware that the following agenda is preliminary and that talk titles, days and times are subject to change. Check back frequently for updates and additions.

TimeEvent
1:00pm – 5:00pmMeeting of the AXYS Clinic & Research Consortium (ACRC)
7:00pm – 9:00pmWelcome Reception.

Receive conference materials and name badges. Pick up t-shirts.

Meet the presenters

Get to know AXYS board members and fellow attendees. Light snacks will be provided.

Wisteria Lanes with bowling, pool & refreshments. See childcare guidelines regarding all individuals under the age 18. (7-10pm)
TimeEvent
7:30am – 8:30am
Near Lullwater Ballroom
Check-in and Registration

Receive conference materials and name badges.
All DaySilverbell Pavilion open for games, crafts and other indoor/outdoor activities.
8:30am – 8:45am
Lullwater Ballroom
Welcoming Remarks and Meet the AXYS Board

Carol Meerschaert, AXYS Executive Director
8:45am – 9:00amHow Research Can Benefit Families and Patients

Rebecca Wilson, PhD
9:00am – 10:30amKeynote addresses:

Current Research and What We Hope to Accomplish

Two panel discussions moderated by Alan Rogol, MD and featuring Allan Reiss, PhD, Nicole Tartaglia, MD, Sharron Close, PhD, Jonathan Blumenthal, PhD, Sophie van Rijn, PhD, Dr. Maximilian Muenke, Dr. Armin Raznahan, Dr. Shanlee Davis
10:30am – 10:45am Break
10:45am – 12:00pmGet to know one another!

Guided, condition-specific socialization activities

Adults with a condition – feel free to visit the Silverbell Pavilion and get to know one another!
10:45am – 12:00pmBrief Research Presentations and keynote follow-up discussions for scientific faculty
12:00pm – 1:00pmLunch

Topic: 1st Time Attendee Panel

Variation(s): All

Speaker(s): Sharron Close, Susan Howell and others

Room:

Silverbell Pavilion open: Games, crafts and other indoor/outdoor activities.
1:00pm – 4:00pmWisteria Lanes open
1:00pm – 1:50pmBreakout sessions

1) Topic: Medical Management of Klinefelter Syndrome in Adults

Variation(s): XXY

Speaker(s): Adrian Dobs, MD

Room:

2) Topic: Behavioral Interventions with the School-Age Child: What you need to know

Variation(s): All

Speaker(s): Hannah Acevedo, BCBA

Room:

3) Topic: To be determined

Variation(s): XXY and XXYY

Speaker(s): Nicole Tartaglia, MD

Room:

4) Topic: The Use of Psychiatric Medications for Serious Mental Health Challenges

Variation(s): All

Speaker(s): David Hong, MD

Room:

5) Topic: A Workshop for Brothers and Sisters of those with an X or Y Variation

Variation(s): All

Speaker(s): Susan Brasher, PhD

Room:
2:05pm – 2:55pmBreakout sessions

1) Topic: Workshop for young people transitioning to adulthood (2:05-5:00pm)

Variation(s): All

Speaker(s): Ginnie Cover (Facilitator), Paul B Dressler, MD, MPH, Maria Vogiatzi, MD

Room:

2) Topic: Retreat for parents of infants and toddlers (2:05-5:00pm)

Variation(s): All

Speaker(s): Susan Howell (Facilitator) + various speakers

Room:

3) Topic: The Adult Years and Aging in Klinefelter Syndrome

Variation(s): XXY

Speaker(s): to be announced

Room:

4) Topic: Gene Function, Brain Development and Behavior

Variation(s): All

Speaker(s): Armin Raznahan, MD, PhD

Room:

5) Topic: to be announced

Variation(s):

Speaker(s):

Room:
3:10pm – 4:00pmBreakout sessions

1) Topic: Workshop for young people transitioning to adulthood (continued)

Variation(s): All

Speaker(s): Ginnie Cover (Facilitator) + various speakers

Room:

2) Topic: Retreat for parents of infants and toddlers (continued)

Variation(s): All

Speaker(s): Susan Howell (Facilitator) + various speakers

Room:

3) Topic: Male Fertility in X and Y Variations

Variation(s): XXY

Speaker(s): Hooman Sadri-Ardekani

Room:

4) Topic: The Neuropsychological Evaluation and What It Can Tell Parents

Variation(s): All

Speaker(s): David Marcus, PhD

Room:

5) Topic: Techniques for Promoting Executive Functioning 

Variation(s): All

Speaker(s): Claire Coles, PhD

Room:
4:10pm – 5:00pmBreakout sessions

1) Topic: Workshop for young people transitioning to adulthood (continued)

Variation(s): All

Speaker(s): Ginnie Cover (Facilitator) + various speakers

Room:

2) Topic: Retreat for parents of infants and toddlers (continued)

Variation(s): All

Speaker(s): Susan Howell (Facilitator) + various speakers

Room:

3) Topic: Special Education: Navigating the IEP Process and Beyond

Variation(s): All

Speaker(s): Erin Frith and others

Room:

4) Topic: Man to Man: Understanding XXY from a Father's Perspective

Variation(s): XXY

Speaker(s): David Hong, MD

Room:

5) Topic: Psychiatric and Neurodevelopmental Comorbidities in XXY

Variation(s): XXY

Speaker(s): Erin Torres, PNP and Srishti Rau, PhD

Room:
6:00pmDinner on your own
7:00pm – 10:00pmWisteria Lanes open

Other activities being planned (Dining, shopping, swimming and more!)
TimeEvent
All Day Silverbell Pavilion open for games, crafts and other indoor/outdoor activities.

Adults with a condition – feel free to visit the Silverbell Pavilion and get to know one another!
9:00am – 9:15am30th Anniversary Celebration
9:15am – 11:30amCondition-specific presentations plus Q&A
(Three 15-minute presentations followed by 30 minutes Q&A)

Speakers: B. Michelle Schweiger, DO, MPH, Amy Talboy, MD, Shanlee Davis, MD and others

1) Topic: XXY

Room:

2) Topic: XYY

Room:

3) Topic: XXX

Room:

4) Topic: XXYY/XXXY

Room:

11:30am – 1:00pmPoster Session

Interact with researchers!
12:00pm – 1:00pmLunch
1:00pm – 1:50pmBreakout sessions

1) Topic: Interview with Awareness Advocate Ryan Bregante, Stefan Schwartz and others

Variation(s): XXY

Speaker(s): Moderated by Susan Howell

Room:

2) Topic: Cognitive and behavioral development of young children with 47,XXY, 47,XXX and 47,XYY aged 1 to 6 years: first results of the TRIXY study

Variation(s): XXY, XXX, XYY

Speaker(s): Sophie van Rijn, PhD

Room:

3) Topic: Potential Legal Issues and Concerns impacting Adults

Variation(s): All

Speaker(s): Sheryl Kelly, Esq. and Gary Glissman

Room:

4) Topic: Social Skill Challenges, Toddlers to Teens

Variation(s): All

Speaker(s): Rebecca Wilson, PsyD

Room:

5) Topic: Educational Resources Including Post-Secondary Education

Variation(s): All

Speaker(s): Myra Byrd

Room:
2:00pm – 4:00pmRegion-specific Support Group meetings

Facilitated by AXYS Executive Director, Carol Meerschaert
4:00pmConference concludes

Conference presenters share their professional and personal opinions and experiences. These opinions and experiences are the presenters’ own and do not necessarily represent the AXYS organization.