AXYSGenetic.org

06/02/2026

AXYS will be represented at The 18th Philadelphia Prenatal Conference, June 4-6, 2026! If you're attending, be sure to stop by our table and say hello to the AXYS team!

Learn more about this conference: https://philapregnancycenter.com/conference-homepage

06/01/2026

The June 2026 AXYS Newsletter is here! https://genetic.org/newsletters/

This month we highlight recent initiatives including the successful EXtra EnergY Challenge and a self-advocate panel held to honor X&Y Chromosome Variation Month. The newsletter also announces upcoming educational opportunities, including a webinar on depathologizing language and lived experiences, encourages participation in NASCARR and the GALAXY Registry to advance research, shares details about the 2027 AXYS Community Conference in Chicago and the 2026 Trisomy X Retreat. Through research, advocacy, education, and peer support programs, AXYS continues to strengthen connections and resources for the X&Y chromosome variation community.

05/29/2026

⚠️ IMPORTANT WEBINAR UPDATE: The next AXYS webinar, "Treat Me Like an Alien”: From Depathologizing Language to Depathologizing Life, that was to be held on June 7 has been rescheduled. The new date is 𝐒𝐮𝐧𝐝𝐚𝐲, 𝐉𝐮𝐧𝐞 𝟐𝟏. Register: https://us06web.zoom.us/webinar/register/2417799871371/WN_oKu73D9DSR-hGSArGGMLRA

Send a message to learn more

05/28/2026

IMPORTANT WEBINAR UPDATE: This webinar has been rescheduled. The new date is 𝐒𝐮𝐧𝐝𝐚𝐲, 𝐉𝐮𝐧𝐞 𝟐𝟏.

UPCOMING WEBINAR
Register here: https://us06web.zoom.us/webinar/register/2417799871371/WN_oKu73D9DSR-hGSArGGMLRA

“Treat Me Like an Alien”: From Depathologizing Language to Depathologizing Life

Speaker: Elliot P***k, Founder and CEO | My XXY, Chromodiversity Foundation

Can you name your child’s three greatest strengths? Can their friends? Can their school? Can their doctor? After 22 years raising a son with 47,XXY, and making every mistake in the book, Elliot P***k shares what he’s learned going from how we talk about difference to what we actually do about it. In 2022, his foundation co-published the “Difference not Deficit” poster with the Australian government to help depathologize the language of genetic variations. But words alone don’t change lives.

Three takeaways: (1) 5 key words that can help change the conversation with schools and doctors. (2) 3 ways to build confidence in kids growing up, from “always presume competence” and “treat me like an alien” to using AI to their advantage. (3) A sneak peek at ChromoCompass, a strengths-first tool co-developed with families and researchers — and how to be first to try it. 30-minute talk followed by 30 minutes of open Q&A moderated by Elliot.

*This webinar will be recorded and the presentation made available on our YouTube channel.

05/08/2026

UPCOMING WEBINAR
Register here: https://us06web.zoom.us/webinar/register/4117769620757/WN_kNf6oEhsR2CPBssL1qeXCQ

Living with X&Y Chromosome Variations: Adult Panel Discussion

Sunday, May 17 | 7:30pm Eastern, 6:30pm Central, 5:30pm Mountain, 4:30pm Pacific | Zoom

Moderator: Sharron Close, Professor of Nursing at Emory University

Five adult members of the AXYS community will discuss living with X and Y chromosome variations with Sharron Close, Professor of Nursing at Emory University. These adults represent a number of the most common genetic signatures:

Pete Orrall, Massachusetts, 47,XXY
Uldis Silgailis, New York, 47,XYY
Andrea Bleifuss, Oregon, 47,###
Jason Stankiewicz, Massachusetts, 48,XXYY
James Heyneman, Montana, ###Y/XXY mosaic

We are grateful to these adults for sharing their experiences with us. There will be opportunity for audience members to ask questions.

*This webinar will be recorded and the initial discussion made available on our YouTube channel.

05/03/2026

UPCOMING AXYS EVENTS: May 2026

Sunday, May 3

AXYS Monthly Drop-in Zoom Chat
1st Sunday of the Month | 9pm Eastern, 8pm Central, 7pm Mountain, 6pm Pacific | Zoom
All variations, parents and adults welcome. Hosted by Ginnie Cover.
Register here: https://us06web.zoom.us/meeting/register/6k_dKr-qQ_K609LocSbn9w #/registration

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Sunday, May 10

AXYS Parent Support Group Meeting
2nd Sunday of the Month | 7pm Eastern, 6pm Central, 5pm Mountain, 4pm Pacific | Zoom
For parents/caregivers of children with any X and/or Y chromosome variation. Breakout rooms will be available based on each specific variation if necessary.
Register here: https://us06web.zoom.us/meeting/register/z56XGUWJRU-tCR_80YwARQ #/registration

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Friday, May 15

The AXYS Community Monthly Open House
3rd Friday of the Month | 5-7pm Mountain | Zoom
Times in other regions: 7-9pm Eastern, 6-8pm Central, 4-6pm Pacific
All X&Y variations, all ages, and parents/caregivers welcome.
For a link to the Zoom meeting, please email Rob & Jamie Lee at [email protected] or contact them via the Facebook group: https://facebook.com/groups/axysdenver

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Monday, May 17

Webinar: Living with X&Y Chromosome Variations: Adult Panel Discussion | 7:30pm Eastern, 6:30pm Central, 5:30pm Mountain, 4:30pm Pacific
Moderator: Dr. Sharron Close
Panel will represent the following variations: XXY | XYY | Trisomy X | XXYY | ###Y/XXY Mosaicism
Register here: https://us06web.zoom.us/webinar/register/4117769620757/WN_kNf6oEhsR2CPBssL1qeXCQ

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Sunday, May 31

AXYS Adults with an X/Y Chromosome Variation Meeting
Last Sunday of the Month, 7:30pm Eastern, 6:30pm Central, 5:30pm Mountain, 4:30pm Pacific | Zoom
For adults (ages 18 and up) with any X and/or Y chromosome variation. Breakout rooms will be available based on each specific variation if necessary.
Register here: https://us06web.zoom.us/meeting/register/FSQNIOkYTxyC20k-5wqHWA

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For all AXYS events, both in-person and online, we ask that you please abide by the AXYS Activities Conduct Policy: https://genetic.org/axys-activities-conduct-policy/

05/01/2026

The May 2026 AXYS Newsletter is here! https://genetic.org/newsletters/

May is X&Y Chromosome Variation Awareness Month! In this month's newsletter we welcome our new Executive Director, Logan Ebel, preview our next monthly webinar, "Living with X&Y Chromosome Variations: Adult Panel Discussion," promote the month-long AXYS Extra Energy Challenge event, and encourage registration in the 2026 KidS Camp sponsored by Lurie Children's Hospital!

Extra Energy Challenge info: https://runsignup.com/Race/MD/Rockville/ExtraEnergyChallengeMoveForChromosomalVariationAwareness

For our Instagram users, be sure to follow us over there as well: https://www.instagram.com/axys

04/10/2026

Save the date for a meaningful and restorative weekend in the beautiful Blue Ridge Mountains! The AXYS Trisomy X Retreat will take place November 13 – 15, 2026, at Kanuga Inn & Lodging in Hendersonville, North Carolina.

Designed for individuals ages 13+ with Trisomy X, along with parents and caregivers, this intimate retreat offers a welcoming space to connect, share, and recharge.

Attendees can look forward to facilitated connections, peer group activities, shared meals, and time to rest - all in a relaxed and supportive setting surrounded by the peaceful nature of the Blue Ridge Mountains.

Mark your calendar - more details coming soon!

04/09/2026

UPCOMING WEBINAR
Register here: https://us06web.zoom.us/webinar/register/6017744672938/WN_XidwIR8vQ-y504omm_Aiaw

Supporting Self-Advocacy and Self-Determination at Home, at School, and in the Community

Monday, April 27 | 8pm Eastern, 7pm Central, 6pm Mountain, 5pm Pacific | Zoom

Speaker: John Strang, PsyD from Children’s National Hospital

Webinar will be recorded and the presentation portion made available on the AXYS YouTube channel.

This interactive session will look at how people with X and Y chromosome variations speak up for themselves in their daily lives and in the larger community. We will draw on lessons from the autistic and disability self‑advocacy movements to explore how youth and adults can strengthen self‑determination, better understand their own needs, and clearly communicate their priorities at home, at school, in medical settings, in relationships, and in their communities. We will also talk about the power of community advocacy through groups like AXYS, where people work together to increase visibility, improve services, and create meaningful change. We will discuss how family members can support a young person’s growing independence by creating environments where self‑advocacy can develop, while also helping navigate real‑world challenges when needed. The session will include time for people with lived experience, including families, to share their own advocacy stories—strategies that worked and challenges—as we come together to support the next generation of young advocates.

04/07/2026

UPCOMING AXYS EVENTS: April 2026

Sunday, April 5

AXYS Monthly Drop-in Zoom Chat
1st Sunday of the Month | 9pm Eastern, 8pm Central, 7pm Mountain, 6pm Pacific | Zoom
All variations, parents and adults welcome. Hosted by Ginnie Cover.
Register here: https://us06web.zoom.us/meeting/register/6k_dKr-qQ_K609LocSbn9w #/registration

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Sunday, April 12

AXYS Parent Support Group Meeting
2nd Sunday of the Month | 7pm Eastern, 6pm Central, 5pm Mountain, 4pm Pacific | Zoom
For parents/caregivers of children with any X and/or Y chromosome variation. Breakout rooms will be available based on each specific variation if necessary.
Register here: https://us06web.zoom.us/meeting/register/z56XGUWJRU-tCR_80YwARQ #/registration

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Friday, April 17

The AXYS Community Monthly Open House
3rd Friday of the Month | 5-7pm Mountain | Zoom
Times in other regions: 7-9pm Eastern, 6-8pm Central, 4-6pm Pacific
All X&Y variations, all ages, and parents/caregivers welcome.
For a link to the Zoom meeting, please email Rob & Jamie Lee at [email protected] or contact them via the Facebook group: https://facebook.com/groups/axysdenver

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Sunday, April 26

AXYS Adults with an X/Y Chromosome Variation Meeting
Last Sunday of the Month, 7:30pm Eastern, 6:30pm Central, 5:30pm Mountain, 4:30pm Pacific | Zoom
For adults (ages 18 and up) with any X and/or Y chromosome variation. Breakout rooms will be available based on each specific variation if necessary.
Register here: https://us06web.zoom.us/meeting/register/FSQNIOkYTxyC20k-5wqHWA

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Monday, April 27

Webinar: Supporting Self-Advocacy and Self-Determination at Home, at School, and in the Community | 8pm Eastern, 7pm Central, 6pm Mountain, 5pm Pacific
Speaker: John Strang, PsyD from Children's National Hospital
Register here: https://us06web.zoom.us/webinar/register/6017744672938/WN_XidwIR8vQ-y504omm_Aiaw

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For all AXYS events, both in-person and online, we ask that you please abide by the AXYS Activities Conduct Policy: https://genetic.org/axys-activities-conduct-policy/