Lindsey Lind - AXYS Program Director

03/13/2026

Research Opportunity!

AXYS would like to share the following opportunity to assist medical research:

Have you or a family member been diagnosed with a genetic condition? Join this NIH study exploring the use of AI in healthcare!

Participate in a 1-hour interview with expert clinical staff at your convenience via video or phone.

Email the principal investigators to get all of the details and participate. (Participants must be 18 years of age or older and can be either the person with the genetic condition or their parent/caregiver)

Contact: Dr. Benjamin D. Solomon: 301-402-8824 ​| [email protected]

Dr. Rebekah L. Waikel: 301-435-6558 ​| [email protected]
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03/13/2026

New Research Opportunity!

AXYS would like to share another new opportunity to assist with research to improve health care for people like you:

Are you a parent or caregiver of a child under 18 with a genetic condition? ​ Your voice matters!

Eastern Michigan University is conducting a study to improve medical genetics care and they need your help! ​

Who can participate? ​
Parents/Caregivers of children under 18 with a genetic condition ​
Must reside in the U.S. ​and be able to speak/read English ​

What’s involved?
Complete a confidential online survey (30 minutes)
Optional: Participate in a virtual interview to share your experiences

Compensation:
Survey Raffle: Win 1 of 6 $100 Amazon gift cards! ​
Interview Participants: Receive a $50 Amazon gift card! ​
Caregivers: Gain access to Dr. Kesley’s virtual stress reduction workshop ​

Get started today!
Scan the QR code or visit: https://redcap.link/f5rf9wo2 ​

Questions? Contact Dr. Kesley Sala-Hamrick at [email protected] or call 734-787-3383. ​
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03/10/2026

Register for the next webinar here: https://us06web.zoom.us/webinar/register/6517714473336/WN_Afw0ZjY8St251IRaN106ag

03/03/2026

Always remember you can contact us at anytime!

03/03/2026

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

In this month's newsletter we discuss the NASCARR (Network for Advancing S*x Chromosome Aneuploidy Research Readiness) initiative which will also be the topic of this month's webinar, share news about new Board Member Whitney Barkley-Denney, and highlight our travel expenses stipend for visiting ACRC (AXYS Clinic and Research Consortium) clinics! Be sure to check out our info on multiple online support group sessions this month, too!

About NASCARR: https://nascarr.rarediseasesnetwork.org/our-consortium

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

03/02/2026

Proud to announce our newest board member!

Whitney Barkley-Denney is a Deputy Director of State Policy and a Senior Policy Counsel at the Center for Responsible Lending, based in Durham, NC. Whitney works with state legislatures, attorneys general, and governors to fight predatory lending, exploitative student loan practices, and unscrupulous debt collectors. Whitney’s lobbying, policy work, and writing focuses particularly on racial disparities in wealth, lending, and the ability to build the American dream.

Whitney and her husband are parents to a son, who is seven, and a daughter, a wonderful three-year-old with Trisomy X. Whitney learned about AXYS when her daughter was diagnosed with 47,### through an NIPT, and it quickly became an invaluable resource. Whitney has been involved with the Trisomy X community since 2022 and joined the board in December 2025.

When she’s not working, Whitney and her family love to travel, hike, and care for a menagerie of chickens, dogs, and a diva kitty cat named Barbara Streisand.

02/28/2026

02/25/2026

Register using this link to attend the next monthly drop in zoom chat!

https://us06web.zoom.us/meeting/register/6k_dKr-qQ_K609LocSbn9w #/registration

02/25/2026

If you missed the webinar on Monday night don't worry, here is a link to the recorded session:

Recorded on February 23, 2026Full Titles of Presentations: 1. Transition to Work & Higher Education: Preparing Individuals with X and Y Chromosome Variations...

02/23/2026

Webinar Tonight!!

Transition to Adulthood – Services for Teens & Adults to Achieve Employment and Independence

Monday, February 23 | 8pm EST
(7pm CST, 6pm MST, 5pm PST)

Speakers: Dr. Dorothy Boothe and Virginia “Ginnie” Isaacs Cover, MSW

Register Here:

Speakers: Dr. Dorothy Boothe and Virginia "Ginnie" Isaacs Cover, MSW This webinar is intended for teens and their parents as well as adults. Transitioning to adulthood is a multiyear process, and for those with X and Y chromosome variations, it can be extended for those who require additional suppor...

02/23/2026

AXYS Adults with an X/Y Chromosome Variation Meeting
Sunday, February 22 | 7:30pm Eastern (6:30pm Central, 5:30pm Mountain, 4:30pm Pacific)

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.

02/17/2026

A new support group added for February!

Trisomy X Parent Support Group

Join Us on Zoom
Sunday, February 22
12pm Eastern Time
(11am Central, 10am Mountain, 9am Pacific)

Join us for a welcoming and open Zoom call designed for families, caregivers, and individuals living with Trisomy X. Whether you're newly navigating this diagnosis or have years of experience, this is a non-judgmental and supportive space to connect, share, ask questions, and learn from each other. We'll talk about real-life experiences, challenges, and helpful strategies related to development, education, health, emotional wellbeing and daily life.

Come as you are - ask anything, or just listen in.

We look forward to seeing you!

Join us for a welcoming and open Zoom call designed for families, caregivers, and individuals living with Trisomy X. Whether you're newly navigating this diagnosis or have years of experience, this is a non-judgmental and supportive space to connect, share, ask questions, and learn from each other.....