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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Mid-Atlantic Support Group Meeting

Register here: https://us06web.zoom.us/meeting/register/D2Og-ghDSEyCYtfT1lgpRQ

The AXYS Mid-Atlantic Support Group will hold a virtual meeting on Saturday, April 19, from 2-4 pm hosted by Stefan Schwarz. Topics include all issues affecting those with 47,XXY; 47,XYY; 47,XXX, and other variations as well as information about the upcoming 2025 Community Conference.

Attendance at all AXYS events requires agreement to abide by AXYS Activities Conduct Policy: https://genetic.org/axys-activities-conduct-policy/

2025-04-03T12:32:38-04:00Categories: |

AXYS Community Monthly Open House

For a link to the Zoom meeting, please email Rob & Jamie Lee at axysrockymountain@gmail.com or contact them via the Facebook group: facebook.com/groups/axysdenver

This gathering will happen on the third Friday of every month. The room will be open from 5pm to 7pm Mountain Time (7pm-9pm Eastern, 6pm-8pm Central, 4pm-6pm Pacific).

“Because this is an Open House, you can join when you want and leave when you need to. You don’t have to be on time, but you can stay as long as you like. We are keeping the room open for two hours. We can keep the room open longer if there are good conversations happening. If you join after the room has been closed, we’ll open it back up if we’re able. If we can’t be present, we’ll pass the host hat to another person in the room and the conversations can continue.

This room is open to everyone impacted by any X&Y chromosome variation to connect with each other, and this includes families and caregivers. The Open House is a place to share resources, stories, and ask questions of the community.

This community is full of knowledge and experience. We all are navigating relationships, doctors and treatments, education, and making decisions while living life. Sometimes you get to connect with someone because they tell a story that sounds like your own. There are times that hearing another perspective gives you ideas about how to improve things in your daily life. Sometimes someone has a resource that really helps.

You may not feel like you need a support group, but please consider, you may be there for someone else. We have seen lives changed by a chance remark. All of our experiences are of value and our stories need to be heard. Often, we get answers to questions we didn’t even know we needed to ask.”

“Thank you for your consideration and we look forward to seeing everybody Friday night!”

– Rob & Jamie Lee
AXYS Rocky Mountain Support Group

2025-04-07T09:55:19-04:00Categories: |

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: |

AXYS Community Monthly Open House

For a link to the Zoom meeting, please email Rob & Jamie Lee at axysrockymountain@gmail.com or contact them via the Facebook group: facebook.com/groups/axysdenver

“Our proposed time for an open house on Zoom is the 2nd Tuesday of the month. We will host the room from 5-10 pm MT.”

“Come in when you can and leave when you want, we don’t expect anyone to stay the whole night, but if you feel like it you are welcome.  If this time never works for you, please tell us and we’ll find a compromise.”

“We would like to keep this group open to all X&Y variations and subgroups because we all have a lot in common. Show up, talk about what’s going on in your life, celebrate successes, and vent about the difficult moments with people who understand. Tap into your community.”

“Separate subgroups are really helpful and we’ll make sure that everyone is made aware of the different groups. The best place to look is the support group page on the AXYS website. And we’ll be talking in the group about how to find these other groups.

Remember that if you don’t feel like you need support right now, it’s still worth showing up because you may meet someone who needs the answers that only you have.”

“Look forward to seeing you,
AXYS Rocky Mountain Chapter”
– Rob & Jamie Lee

2025-02-20T11:44:48-05:00Categories: |

AXYS Community Monthly Open House

For a link to the Zoom meeting, please email Rob & Jamie Lee at axysrockymountain@gmail.com or contact them via the Facebook group: facebook.com/groups/axysdenver

“Our proposed time for an open house on Zoom is the 2nd Tuesday of the month. We will host the room from 5-10 pm MT.”

“Come in when you can and leave when you want, we don’t expect anyone to stay the whole night, but if you feel like it you are welcome.  If this time never works for you, please tell us and we’ll find a compromise.”

“We would like to keep this group open to all X&Y variations and subgroups because we all have a lot in common. Show up, talk about what’s going on in your life, celebrate successes, and vent about the difficult moments with people who understand. Tap into your community.”

“Separate subgroups are really helpful and we’ll make sure that everyone is made aware of the different groups. The best place to look is the support group page on the AXYS website. And we’ll be talking in the group about how to find these other groups.

Remember that if you don’t feel like you need support right now, it’s still worth showing up because you may meet someone who needs the answers that only you have.”

“Look forward to seeing you,
AXYS Rocky Mountain Chapter”
– Rob & Jamie Lee

2025-02-20T11:42:51-05:00Categories: |

Cardiovascular risk and mortality in men receiving testosterone replacement therapy for KS in Denmark

Article Title: Cardiovascular risk and mortality in men receiving testosterone replacement therapy for Klinefelter syndrome in Denmark: a retrospective cohort study

Authors: Chang, Pedersen, Skakkebæk, Berglund, and Gravholt

Date of Publication: February 1, 2025

TRT could alleviate excess mortality in KS and appears safe regarding cardiovascular risk. Today, most men with KS go undiagnosed, missing proper medical attention. There is a dire need for a policy change to ensure timely diagnosis and treatment in all men with KS.”

Read more

2025-02-12T12:28:55-05:00Categories: 47,XXY (Klinefelter)|Tags: , |

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 Sponsorship Opportunities

Sponsorship Opportunities

The AXYS Family Conference brings children and adults with X and Y chromosome variations, their families and caregivers together with advocates, community organizations, parent group leaders, clinical and research professionals including genetic counselors, geneticists, and endocrinologists.

AXYS, a 501(c)(3) non-profit, is pleased to offer sponsorship opportunities to fit every budget. Your support allows us to keep this conference affordable for families who gain valuable support from being with others with their condition. Your sponsorship also supports the participation of leading researchers and clinicians working in this area so families can learn directly from them.

Don’t hesitate to reach out to any board member for more information or contact our Board Chair Ginnie Cover.

Or download this prospectus to learn about our sponsorship opportunities.
2025-07-07T15:56:42-04:00
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