Helpline: 1‑267‑338‑4262 | helpline@genetic.org
AXYS - The Association for X&Y Chromosome Variations
Helpline: 1‑267‑338‑4262 | info@genetic.org

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2025 AXYS Community Conference Materials

2025 AXYS Community Conference Materials

Presentations Slides

Poster Presentations

All Variations

15-year trends in US pediatric sex chromosome trisomy diagnoses | Shanlee Davis, Karli Swenson, Alexandra Carl, Agnethe Berglund, Courtney Finlayson, Chijioke Ikomi, Nicole Tartaglia

Demographic Composition of Participants in Sex Chromosome Aneuploidy Studies across the Globe: a 20-year Systematic Review | Karli Swenson

The eXtraordinary Babies Study: Breastfeeding Trends and Challenges in the First Year of Life | Lidia H. Grzybacz, Susan Howell, Shanlee Davis, Judith Ross, Nicole Tartaglia

The eXtraordinarY Babies Study: Evolving Parental Perspectives and Priorities While Raising a Child Prenatally Diagnosed with Sex Chromosome Trisomy | Susan Howell, Kayla Molison, Talia Thompson, Shanlee Davis, Judith Ross, Nicole Tartaglia

The eXtraordinarY Babies Study: Parental Emotional Experiences and Coping Strategies During Prenatal Sex Chromosome Aneuploidy Diagnosis | Kayla Molison, Susan Howell, Talia Thompson, Samantha Bothwell, Shanlee Davis, Judy Ross, Nicole Tartaglia

From Deficit to Difference: Depathologizing the Language of Genetics | Elliot Polak, Nina Polak

Prenatal, Birth, and Neonatal Outcomes in Sex Chromosome Aneuploidies: Data from the INSIGHTS and GALAXY Registries | Alyssa Keller, Alexandra Carl, Samantha Bothwell, Karli Swenson, Susan Howell, Nicole Tartaglia, Shanlee Davis

47,XXY

Could there be a link between venous thromboembolic events and testosterone replacement therapy in patients with Klinefelter Syndrome? | I. Samy, A. Alarayedh, Kapz, P. Carroll, T. Yap

A double diagnosis: The psychological impact of discovering Klinefelter Syndrome during infertility evaluation | Claire Harkin, J. Elander, B. Woodward, T. Yap

Growth Charts for Boys with 47,XXY | Samantha Bothwell, Shanlee Davis, Taylor Marshall, Karli Swenson, Natalie Nokoff, Amelia Middleton,, Anna Furniss, Maram Alkhdour, Dimitri Christakis, Victoria Elliott, Jennifer Heeley, Chijioke Ikomi, Judith Ross, Stephen Stone, Maria Vogiatzi, Nicole Tartaglia

KidS Camp: Encouraging Physical Fitness and Positive Self-Concept in Adolescents with Klinefelter Syndrome | S. Ratnam, J. Papadakis, A. Goetsch Weisman, E. Leeth, T. Huit, D. Lee, K. Pothast, A. Tubman, L. Lucio, W. Brickman, C. Finlayson

Predicting Variable Developmental Outcomes from Family Data in XXY Syndrome | Shara Reimer, Siyuan Liu, Kathleen E. Wilson, Liv S. Clasen, Erin N. Torres, Jonathan Blumenthal, Armin Raznahan

48,XXYY

The eXtraordinarY Baby Study: Natural History of Infants Identified with XXYY in the Prenatal Period | Kayla Nocon, Karli Swenson, Susan Howell, Shanlee Davis, Samantha Bothwell, Judy Ross, Nicole Tartaglia

Psychotropic Medication Use In 48,XXYY Syndrome: Patterns, Effectiveness, and Clinical Implications | Joanna Dreyer, Amity Howard, Susan Howell, Samantha Bothwell, Kayla Molison, Alexandra Carl, Karli Swenson, Shanlee Davis, Gail Decker, GALAXY consortia, Nicole Tartaglia

2025-08-07T13:31:16-04:00

2025 AXYS Community Conference Agenda for Virtual Attendees

We will be using Zoom for the various virtual conference sessions. Download the latest version of Zoom here.

Instructions for signing up and joining virtual conference sessions will be emailed to registrants after registration closes on July 21.

2025 AXYS Community Conference

2025 AXYS Community Conference Agenda for Virtual Attendees

Saturday, July 26

8:30-9:15am
Session 1
9:30-11:45am
Session 2
Welcome and Keynote
12-1pm
Lunch
1-1:50pm
Session 3
2-2:50pm
Session 4
3-3:50pm
Session 5
4-5pm
Session 6
The Extraordinary Babies Study- Progress and Research Findings

Nicole Tartaglia
Kayla Nocon
1) Welcome
2) Site Summaries - ACRC Members
3) GALAXY Registry -
Past Insights, Current Progress, Future Directions

Shanlee Davis
Alexa Carl
Lunch Hour BreakMeet and ChatUpdates from the NIMH Intramural Research Program Study on X/Y Chromosome Variations

Armin Raznahan
X and Y Chromosome Variations and Fertility Options

Hooman Sadri
"Ask the Doctors” Chat

Courtney A. Finlayson (pediatric endocrinologist)

T. Zachary Huit (pediatric psychologist)

Sunday, July 27

9-10am
Session 7
10-11am
Session 8
11am-12pm
Session 9
12-1:30pm
Lunch
1:45-3pm
Session 10
Unpacking Social and Emotional Challenges for Teens/Young Adults with X/Y Variations

Caitlin Middleton
Kate Deer
Eval and Treatment
Of ADHD & Anxiety
In Children

Caitlin Middleton
Ciara Gurley
Understanding X and Y Variations: Genetic Diagnosis, Terminology & Next Steps Planning

Susan Howell
Kayla Molison
Lunch BreakOpen Chat

All presentations being live streamed to virtual participants will be available for viewing after the conference.

2025-07-22T10:57:23-04:00

2025 AXYS Community Conference | Conference Safety

Conference Safety

AXYS cares about safety and security for all of our Family Conference attendees and we provide a family-friendly atmosphere at our events where all participants feel comfortable. With this in mind the board has adopted the AXYS Activities Conduct Policy. Please read this document. Your registration for attendance at any AXYS event indicates your agreement to abide by this policy and its terms. Should you not agree, you can apply to have your registration refunded by sending a request to our Board Chair.

Name Badges

AXYS requires attendees to wear their name badges at all times during the conference. You must display your badge to be admitted to the conference educational sessions as well as the Wisteria Lanes and other hotel areas being used by the conference.

Badges are picked up upon arrival when you check in at the registration desk. Should you lose your badge, please come back to the registration desk with a photo ID to receive a replacement.

Family members not attending sessions

We know that some of our conference attendees bring family members to assist with family member care. We welcome those family members and ask that if they wish to assist at the conference that they register with Ginnie Cover, our Chair as a conference volunteer so they can be issued a name badge. Please note if they are able to volunteer to assist others, or if they are only able to care for just your family member.

Children under 18

AXYS strives to create a family-friendly conference. Therefore, the registration fee for children ages 0-17 includes a professionally staffed child care center to give parents the opportunity to fully enjoy the speakers for both Saturday and Sunday. On Saturday, Children 11-17 will have the opportunity to participate in a Chromodiversity Camp which is also professionally staffed. The camp is available on a first come first serve basis with enrollment limited to 15. On Sunday, there will be a variety of activities for children 11 to 17 including board games, crafts and videos. Children ages 0-17 who are registered will have breakfast and lunch available on Saturday and Sunday. Bracelets will be provided for children 0-17 registered for childcare and Chromodiversity Camp indicating that they may have meals and participate in organized activities.

We warmly welcome older children and teens at our conference. We’ve contracted for 2 sessions in the Wisteria Lanes bowling center at the hotel. While these areas will be staffed with volunteers, parents are responsible for their children at all times. Parents will be required to sign children in and out of the childcare services or Chromodiversity Camp, and must provide a cell phone number where they can be reached at any time. Parents must be available at any time to collect their child in case any problem occurs.

Teens ages 13-17 need not be registered for the conference if they do not wish to have provided meals or to participate in childcare activities and camp. Children 0-12 must be supervised by a parent or other guardian if they are not registered.

2025 AXYS Community Conference Logo

2025-06-13T12:51:33-04:00

Chromodiversity Camp Registration

Chromodiversity Camp Registration

While parents attend the AXYS Conference, Chromodiversity is offering a free, fun, and supportive Teen ChromoEvent on Saturday, July 26 from 8:30 AM to 2:00 PM at the Emory Conference Center Hotel in Atlanta. Open to kids and teens aged 11 to 17 with X or Y variations, and their siblings.

The day includes:

  • Bowling and billiards at Wisteria Lanes
  • Strengths discovery quiz
  • Outdoor walk (weather permitting)
  • Lunch time
  • Lived-experience mentorship with Brock (who has an extra X chromosome himself)
  • Small take-home gift

Spots are limited and will be filled on a first come, first served basis. (Kids 13+ do not need to stay the entire duration if they prefer some unstructured time.) For any questions, contact nina@chromodiversity.org. For more information, visit: https://www.chromodiversity.org/axys-chromoexperience

To reserve your spot, register your child for the conference, then send an email to Lindsey Lind by June 20 at llind@genetic.org with the following information for each child attending:

  • Name of child
  • Birthdate
  • Name of parent
  • Parent email
  • Parent cell phone
  • Gender
  • Genetic signature, if the child has an X or Y chromosome variation
  • Is the child a sibling of a child with an X or Y chromosome variation
  • Please let us know about any special needs

2025 AXYS Community Conference Logo

2025-06-13T13:08:30-04:00

AXYS Monthly Drop-in Chat

AXYS Monthly Drop-in Chat

1st Sunday of the Month, 9pm EDT (7pm CDT, 8pm MDT, 9pm PDT)

All variations, parents and adults welcome. Hosted by Ginnie Cover.

Register for the next meeting on Zoom


About these meetings

For security reasons, we ask that you please register in advance for each meeting. We apologize for this inconvenience.

AXYS Monthly Drop-in Chats are meeting spaces for anyone 18 and up with any X and/or Y variation and for parents of children with one of these variations!

Come hang out in an open, friendly environment. Chat with others or just check things out with no obligation to speak or be on camera. Celebrate your accomplishments and support others in their challenges.

Your privacy is very important to us. AXYS will not record any of these meetings and we ask that you please respect the privacy of other attendees. We also ask that you abide by the AXYS Activities Conduct Policy: https://genetic.org/axys-activities-conduct-policy/

This meeting is not intended to be therapy and should not be used as a substitute for the services of a mental health professional.

AXYS Monthly Drop-in Chat

2025-06-05T14:59:31-04:00Tags: |

2025 AXYS Community Conference Agenda

2025 AXYS Community Conference Agenda

4:30-7pm – Check-in

5-7pm – Dessert Welcome Reception


Saturday, July 26

7-8:30am – Breakfast Buffet

8:30am-4:30pm – Childcare

8:30am-2pm – Chromodiversity Camp

2025 AXYS Community Conference Logo

Room8:30-9:15am
Session 1
9:30-11:45am
Session 2
Welcome and Keynote
12-1pm
Lunch
1-1:50pm
Session 3
2-2:50pm
Session 4
3-3:50pm
Session 5
4-5pm
Session 6
Emory Amphitheater

(Live Streamed & Recorded)
**
The Extraordinary Babies Study- Progress and Research Findings

Nicole Tartaglia
Kayla Nocon
1) Welcome
2) Site Summaries - ACRC Members
3) GALAXY Registry -
Past Insights, Current Progress, Future Directions

Shanlee Davis
Alexa Carl

(No breakout sessions during Keynote Address)
Condition-specific
Meet and Chat
Sessions
Updates from the NIMH Intramural Research Program Study on X/Y Chromosome Variations

Armin Raznahan
X and Y Chromosome Variations and Fertility Options

Hooman Sadri
Condition-specific
"Ask the
Doctors”

XXY Parents
Oak AmphitheaterStrategies for Promoting Executive Functioning for adolescents & adults

M. Joliffe
S. Martin
R. Wilson
Condition-specific
Meet and Chat
Session

XXY Parents
Evaluation and Treatment of ADHD/Anxiety in Adolescents/Adults with SCA

Kate Deer
Joanna Dreyer
Developmental Trajectories of Children with X and Y chromosome variations

Nicole Tartaglia
Rebecca Wilson
Condition-specific
“Ask the
Doctors”

XXY Adults
AzaleaXXY Adults
Meet and Greet
Condition-specific
Meet and Chat
Session

Trisomy X
Transition to Adulthood- Services for Teens and Adults to Achieve Employment and Independence

Dorothy Boothe
Ginnie Cover
Mental Health in Young Adults with X and Y Chromosome Variations
-Transition to Adulthood

David Hong
Condition-specific
“Ask the
Doctors”

Trisomy X
Mt. LaurelTrisomy X adults
Meet and Greet
Condition-specific
Meet and Chat
Session

XYY
Considerations for testosterone therapy for children and teens with sex chromosome aneuploidy

Alan Rogol
Complex Relationships of Siblings when there are Special Needs

Susan Brasher
Condition-specific
“Ask the
Doctors”

XYY
HickoryXYY Adults
Meet and Greet
Condition-specific
Meet and Chat
Session

XXY Adults
Unassigned UnassignedCondition-specific
“Ask the
Doctors”

XXYY/XXXY
DogwoodXXYY & XXXY Adults
Meet and Greet
Condition-specific
Meet and Chat
Session

XXYY/XXXY
UnassignedUnassignedUnassigned

**All Emory Amphitheater presentations are also live streamed to virtual participants and available to all for viewing after the conference.

Unassigned rooms are available for research recruitment or for informal meetings by request to Program Director Lindsey Lind.


Sunday, July 27

7:30-9am – Breakfast Buffet

8:30-3pm – Childcare

Room9-10am
Session 7
10-11am
Session 8
11am-12pm
Session 9
12-1:30pm
Lunch and Poster Session
1:45-3pm
Session 10
Emory Amphitheater

(Live Streamed & Recorded)
**
Unpacking Social and Emotional Challenges for Teens/Young Adults with X/Y Variations

Caitlin Middleton
Kate Deer
Eval and Treatment
Of ADHD & Anxiety
In Children

Caitlin Middleton
Ciara Gurley
Understanding X and Y Variations: Genetic Diagnosis, Terminology & Next Steps Planning

Susan Howell
Kayla Molison
Support Groups by
Genetic Signature
Oak AmphitheaterSupporting Academic and Social-Emotional Education of Students with X&Y Chromosome Variations

Amy Talboy
Catherine Trapani
Testosterone Treatment Options in Klinefelter Syndrome

Hooman Sadri
What Adults with X/Y Variations Want Parents and Others to Know Panel Discussion

Mod. by Sharron Close
Support Groups by
Genetic Signature
AzaleaTips for Staying Healthy for Teens and Adults with X and Y Chromosome Variations

Maria Vogiatzi
X/Y Chromosome Variations and Autism: Insights from Large Scale Population Research

Matthew Oetjens
Promoting physical activity in Children with XXY

T. Zachary Huit
Support Groups by
Genetic Signature
Mt. LaurelDisclosing the Diagnosis- Panel Discussion

Mod. by Susan Howell
UnassignedUnassignedSupport Groups by
Genetic Signature
HickoryUnassignedUnassignedUnassignedSupport Groups by
Genetic Signature
DogwoodUnassignedUnassignedUnassignedSupport Groups by
Genetic Signature

** All Emory Amphitheater presentations are also live streamed to virtual participants and available to all for viewing after the conference.

Unassigned rooms are available for research recruitment or for informal meetings by request to Program Director Lindsey Lind

2025-08-05T17:49:59-04:00Tags: |

2025 AXYS Community Conference | Childcare Registration

Childcare Registration

Child Care Hours

  • Saturday, July 26, 2025: 8:30 am to 5:00 pm
  • Sunday, July 27, 2025: 8:30 am to 3:00 pm

Night Owl Kids Care, LLC      

Child care will be provided by Night Owl Kids Care, LLC. Night Owl has been in business for 10 years and provides child care for, among others, Department of Defense events, and all employees are required to go through Department of Defense background checks. In order to register your child(ren) for child care during the Conference, after you register for the Conference, you will be provided with a link to Night Owl and will be required to fill out their registration form, including relevant medical issues and special needs, no later than July 5, 2025. After that date, unfortunately, no additional registrations can be accepted. Information regarding Night Owl is available at www.nightowlkidscare.com.

Activities

  • Developmentally appropriate activities will be provided by Night Owl Kids Care, LLC including DVDs, toys, games, craft and art supplies.
  • Parents/guardians must label all clothes and toys brought to the childcare room with the child’s name. No valuable items can be left with the child in the childcare facility.

Food and beverages

  • AXYS will provide water and light snacks as well as lunch in the childcare center.
  • Please have your children eat breakfast prior to arriving in the center for the day.

Contact information

  • Parents must provide a cell phone number where they can be reached at any time while the child is in the child care room. Parents must be available at any time to collect their child in the child care room in case any problem occurs while their child is being cared for.
  • Parents or persons authorized by the parents to check child(ren) in and out need to bring their government issued photo ID, such as a driver’s license, state-issued ID, passport, or military ID.

Additional information

  • The child care services will not administer any prescription medicine to the children. Parents/guardians must return to the childcare facility to dispense any medicine to their child.
  • For the health of other children in care, sick children will not be allowed into the child care facility.
  • Parents need to provide a sufficient number of diapers/pull-ups needed for the time in care to support proper hygiene for their children. Changing mats, wipes, hand sanitizer and cleaning materials will be provided by Night Owl Kids Care, LLC for the use of the caregivers during the hours of care.

2025 AXYS Community Conference Logo

2025-06-13T12:54:03-04:00

2025 AXYS Community Conference Volunteer Opportunities

Volunteer Opportunities

The AXYS community gathers at the conference to learn and to build their support network with others. While we all play a role in the success of this conference, AXYS seeks a variety of volunteers to help with key roles:

1. Support Group Leaders/Co-Leaders

AXYS schedules afternoon discussion groups by genetic signature, age level, and role- either self-advocate or parent/sibling/partner.

2. Greeters

Make every conference attendee feels welcome and connected. Greet guests as they arrive. Help attendeescan find the locations for hotel rooms and facilities. Answer any questions.

3. Registration Assistants

Staff the registration table, check in conference attendees, distribute t-shirts, name tags and conference materials, and answer questions.

4. Breakout Room Facilitators

Welcome attendees to each session, assure the speaker has the audiovisual equipment needed for the session and that it is functioning properly. Swiftly notify AXYS staff of any issues. Distribute any handouts. Straighten room after the session to assure it is ready for the next session.

We expect to add more opportunities so check this page often.

Please complete this form or contact our Rick Frith to volunteer

2025 AXYS Community Conference Logo

2025-02-12T14:28:44-05:00

2025 AXYS Community Conference T-Shirts

2025 AXYS Community Conference T-Shirt

2025 AXYS Community Conference T‑Shirts

Thank you to everyone that ordered a 2025 AXYS Community Conference t-shirt!

T-shirts will be delivered to the conference and you will be able to pick them up during check-in.

The deadline to order t-shirts was June 1. We are no longer taking new orders for shirts. Shirts will not be available for purchase at the conference.

If you have any questions please email Gail Decker.

2025-07-07T16:02:03-04:00

AXYS Strategic Plan

AXYS Strategic Plan 2025-2028

Click or tap to view/download

AXYS Strategic Plan 2025-2028 (color)
AXYS Strategic Plan 2025-2028 (color version)
AXYS Strategic Plan 2025-2028 (greyscale)
AXYS Strategic Plan 2025-2028 (greyscale version)
2024-12-18T15:56:55-05:00
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