Conference Agenda

(Last updated 5-17-19)

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.

EMORY CONFERENCE CENTER & HOTEL

TimeEvent
1:00pm – 5:00pmMeeting of the AXYS Clinic & Research Consortium (ACRC)
3:00pm – 7:00pmCheck-in for your hotel room.

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

Dinner on your own. Enjoy a delicious dinner at the hotel restaurant The Club Room or local restaurants including those at Emory Point, a short walk from the hotel.
7:00pm – 9:00pmOpening dessert reception. Meet fellow attendees and presenters. Light snacks will be provided.

Wisteria Lanes with bowling, pool & refreshments. See childcare guidelines regarding all individuals under the age of 18. (7-10pm)

EMORY CONFERENCE CENTER & HOTEL

TimeEvent
7:30am – 10:00am
Conference Center Lobby
Check-in. Receive conference materials and name badges.

• All attendees, especially teens and young adults, are welcome to drop in the Silverbell Pavilion all day for games and socializing. Also enjoy the hotel pool, outdoor areas and the nature trail.
8:30am – 8:45am
Emory Amphitheatre
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, Nicole Tartaglia, MD, Sharron Close, PhD MS CPNP-PC, Sophie van Rijn, PhD, Maximilian Muenke, MD, FACMG, Armin Raznahan, MD PhD, Shanlee Davis, MD
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: Delicious buffet lunch served in the hotel dining room.

Topic: 1st Time Attendee Panel

Variation(s): All

Speaker(s): Sharron Close, PhD MS CPNP-PC, Susan Howell, MS CGC and others

Room:

Silverbell Pavilion open: Games, crafts and other indoor/outdoor activities.
1:00pm – 4:00pmWisteria Lanes open. All attendees, especially teens and young adults, are welcome for bowling, pool, video games and socializing.
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: Update on NIH-supported Klinefelter Research Project

Variation(s): XXY

Speaker(s): Allen Reiss, MD

Room:

3) Topic: 15 Years of eXtraordinarY Kids

Variation(s): All

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

Variation(s): All

Speaker(s): Hannah Acevedo, BCBA

Room:

4) Topic: Gene Function, Brain Development and Behavior

Variation(s): All

Speaker(s): Armin Raznahan, MD, PhD

Room:

5) Topic: Metabolic Syndrome in X and Y Variations

Variation(s): All

Speaker(s): Michelle Schweiger, DO, MPH

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, MS CGC (Facilitator) + various speakers

Room:

3) Topic: Male Fertility in X and Y Variations

Variation(s): XXY

Speaker(s): Hooman Sadri-Ardekani,MD, Stanley Kogan, MD, Stuart Howards, MD, Akanksha Mehta, MD, MS

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, MS CGC (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:
5:00pmDinner on your own. Enjoy the delicious dinner at the hotel restaurant The Club Room or local restaurants including those at Emory Point, a short walk from the hotel.

Click here to Explore Atlanta.

Feel free to use the Conference Facebook group to connect with other families so you can dine and explore together.
7:00pm – 10:00pmWisteria Lanes open. All attendees, especially teens and young adults, are welcome for bowling, pool, video games and socializing.

EMORY CONFERENCE CENTER & HOTEL

All attendees, especially teens and young adults, are welcome to drop in the Silverbell Pavilion all day for games and socializing. Also enjoy the hotel pool, outdoor areas and the nature trail.

TimeEvent
9:00am – 9:15amMeet in Emory Amphitheatre for guidance on how morning sessions will flow
9:15am – 11:30amCondition-specific presentations plus Q&A
(Three 15-minute presentations followed by 30 minutes Q&A)

1) Topic: XXY

Speakers: Shanlee Davis, MD, Sharron Close, PhD MS CPNP-PC, Hooman Sadri-Ardekani, MD, PhD

Room:

2) Topic: XYY

Speakers: Amy Talboy, MD, Hannah Acevedo, BCBA, Allan Reiss, MD

Room:

3) Topic: XXX

Speakers: Nicole Tartaglia, MD, Sophie Van Rijn, PhD, Rebecca Wilson, PhD

Room:

4) Topic: XXYY/XXXY

Speakers: Nicole Tartaglia, MD, Rebecca Wilson, PhD, Shanlee Davis, MD

Room:

11:30am – 1:00pmPoster Session

Interact with researchers!
12:00pm – 1:00pmLunch: Delicious buffet lunch served in the hotel dining room.
1:00pm – 1:50pmBreakout sessions

1) Topic: Interview with Awareness Advocates Ryan Bregante, Stefan Schwarz, William Kelly, and Kelsey Maffei

Variation(s): XXY

Speaker(s): Moderated by Susan Howell, MS CGC

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.