Navigating Trisomy X: From Diagnosis to Early Childhood
Wednesday, October 2 | 8PM Eastern Time | 7PM Central | 6PM Mountain | 5PM Pacific
On Zoom
This Zoom meeting will be focused mostly on expecting parents and families new to the diagnosis of Trisomy X.
Picnic in a park in Mountain View, CA
Please RSVP at SFBay@genetic.org to receive specific location.
All ages and all X&Y variations welcome. Family members welcome too.
Bring beverages or food to share.
Article Title: Neurocognitive and behavioral development in young children (1-7 years) with Sex Chromosome Trisomy
Authors: Van Rijn, Kuiper, Bouw, Urbanus, and Swaab
Date of Publication: March 6, 2023
“Study outcomes showed early behavioral symptoms in young children with SCT, and neurocognitive vulnerabilities, already from an early age onwards. Neurobehavioral and neurocognitive difficulties tended to become more pronounced with increasing age, and were rather robust; independent of specific karyotype, pre/postnatal diagnosis or ascertainment strategy.
A more longitudinal perspective on neurodevelopmental ‘at risk’ pathways is warranted, also including studies assessing effectiveness of targeted early interventions. Neurocognitive markers that signal differences in neurodevelopment may prove to be helpful in this. Focusing on early development of language, social cognition, emotion regulation, and executive functioning may help in uncovering early essential mechanisms of (later) neurobehavioral outcome, allowing for more targeted support and early intervention.”
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
Article Title: Evidence‑based recommendations for delivering the diagnosis of X & Y chromosome multisomies in children, adolescents, and young adults: an integrative review
Authors: Riggan, Ormond, Allyse, and Close
Date of publication: April 22, 2024
“Patient experiences suggest there should be heightened attention to diagnosis delivery, in reference to the broader ethical and social impacts of a SCM diagnosis. We present recommendations for optimal disclosure of a SCM diagnosis in early and late childhood, adolescence, and young adulthood.”
Friday, July 25 – Sunday, July 27, 2025
The Emory Conference Center Hotel | Atlanta, GA
AXYS is delighted to announce the comeback of the in-person Community Conference, the first since 2019, as we return to the amazing facilities at the Emory Conference Center Hotel in Atlanta, Georgia! Save the date for what will be a wonderful gathering of our entire community!
The AXYS Community Conference brings together people diagnosed with an X or Y chromosome variation, parents, families, friends, healthcare professionals, and researchers to connect with people who understand the journey, learn about available resources and supports, and engage with experts to gain insight on X and Y chromosome variation research and approaches to care.
REGISTRATION DEADLINES ▶ In-person: July 10 | Virtual: July 21
(registration closes at 11:59pm Eastern Time on the above dates)
We’re so happy you can join us! A quick reminder that all AXYS event attendees agree to abide by the AXYS Activities Conduct Policy. Please read this prior to attending an AXYS event.
Planning to fly to the conference? Check this list to make sure you have an acceptable form of ID for your trip.
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
New meetings on Fridays starting September 6 | 12-1pm Eastern Time
Start time in other regions: 11am Central | 10am Mountain | 9am Pacific
AXYS Chat Pop-ins are meeting spaces for anyone 18 and up with any X and/or Y variation! We would like to stress that these meetings are intended ONLY for those with an X/Y variation.
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.
Think of it as a room with an open-door policy; come to whatever meetings you want; come and go as you please within the 1-hour time period.
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.
Article Title: A qualitative exploration of experiences of gender identity and gender questioning among adults with Klinefelter syndrome/XXY
Authors: Harkin and Elander
Date of Publication: July 22, 2024
“The study provided novel insights into the gender identity journeys of people with KS/XXY, from early attempts to understand and make sense of gender, through dealing with social pressures, questioning gender identities, developing gender identities more congruent with feelings, and experiences of hormone replacement therapy. These new insights can inform improved treatment and care for KS/XXY people.”
