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2025 AXYS Community Conference

2025 AXYS Community Conference Logo

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.

2025-07-15T17:05:39-04:00Tags: , |

AXYS Consensus Documents

2024-02-15T11:24:13-05:00

AXYS Klinefelter Syndrome CME Course

CME Course Title: Klinefelter Syndrome: Identifying, characterizing and managing an underdiagnosed condition with serious consequences

Course Directors: Hooman Sadri, MD, PhD and Stuart Howards, MD

Reviewed by the AXYS Clinic & Research Consortium (ACRC)

Date: October 2020

“Introduction:

Have you unknowingly seen someone with Klinefelter Syndrome in your practice?

Chances are, you have. Klinefelter Syndrome (KS) is the most common sex chromosome disorder, occurring in approximately 1 out of every 600 male births. Yet an estimated 60 to 75% of those with KS will remain undiagnosed throughout their lifetimes.

Why does this matter?

It matters because KS is linked to significantly higher mortality rates and a range of physical, neurocognitive, and social/behavioral comorbidities as well as a lower quality of life and socioeconomic status. Some healthcare providers believe that delayed diagnosis can increase patient morbidity. And it matters because those with KS are getting lost in our healthcare system. Studies show that the majority of individuals with KS report being dissatisfied with their care. In addition, many with KS and their families find that their providers have outdated information about the condition, or little information at all. By learning more about the many facets of KS, providers across the healthcare system can work together to better treat and support those with this condition and their families.”

Read more

2020-11-28T15:55:52-05:00Categories: 47,XXY (Klinefelter), Resources|Tags: |

Legal

Legal Resources

Individuals with an X or Y variation may, on occasion, find themselves involved with government institutions, care providers, law enforcement and/or a legal system that is unfamiliar with X and Y variations. AXYS provides the following resources for those individuals, or their families, for sharing with relevant authorities and service providers.

AXYS is not a law firm and does not provide legal or medical advice. All resource material is for information purposes only and may not reflect the most current legal or medical developments.  We expressly disclaim all liability to any person with respect to the material and the consequences of anything done or omitted to be done wholly or partly in reliance upon any of the material.  No one should act or refrain from acting on the basis of any material without seeking the appropriate legal or other professional advice on the particular facts and circumstances at issue.

Resource Links

AXYS Criminal Justice Task Force White Paper

Legal Issues and Challenges – Presentation Slides

Examples and Resources to Support Criminal Justice Entities in Compliance with the ADA

Journal of the American Society of Psychiatry and the Law

ARC – Criminal Justice System and Disability Advocates

ARC – National Center on Criminal Justice and Disability

Principles for Prosecutors (this paper focuses on Asperger’s Syndrome but the recommendations really apply to any Autism Spectrum condition as well as XXY and other x and y chromosome variations).

Cognitive and Neurological Aspects of Sex Chromosome Aneuploidies

Australia Section 32 Booklet – This program is not in place in the U.S. but could be a helpful reference when talking with courts or prosecutors about the need for special consideration and options with developmentally challenged adults dealing with criminal charges. We need to be advocating for this type of program in the U.S. criminal justice system.

Disorders of Executive Functions Civil and Criminal Law Applications by Harold Hall (book)

Caught in the Web of the Criminal Justice System by Lawrence Dubin (book)

Sexual Behavior, Legal Issues and Autism Spectrum

2025-05-09T12:29:59-04:00

Transitioning to Adulthood

Transitioning to Adulthood is a series of booklets prepared by Renee Beauregard of the XXYY Project. This is a summary of steps that parents/guardians of young adults with developmental disabilities must consider in preparing for their entry into the adult world of employment and independent living.

The recommendations are focused on young men with 48 chromosomes, rather than the 47 that describe the trisomy X/Y variations (Klinefelter syndrome, Trisomy X and 47,XYY.) For this reason, not all of the assumptions regarding functioning level will apply to all young people with X and Y chromosome variations. Take this into consideration when reading through the sections.

Transitioning to Adulthood – Part 1: Laying the Groundwork

Transitioning to Adulthood – Part 2: Teens and Young Adults

Transitioning to Adulthood – Part 3: Protecting Your Son from Trouble: Victimization, Fraud, and Himself

Transitioning to Adulthood – Part 4: First, He Needs an Income

Transitioning to Adulthood – Part 5: Addressing His Medical Needs

Transitioning to Adulthood – Part 6: Continuing Education Options

Transitioning to Adulthood – Part 7: Where Will He Live?

Transitioning to Adulthood – Part 8: Disability Services

Transitioning to Adulthood – Part 9: Long-term Planning

Transitioning to Adulthood – Part 10: Older Adults: Now What Do We Do?

2025-05-09T12:29:44-04:00

Education

Most children and adolescents whose development is affected by having an X or Y variation are eligible for special education services. US federal law, the Individuals with Disabilities Education Act (IDEA) includes a variety of safeguards and options including Part C which provides for services to children birth to 3 years of age, and Part B which mandates a free public education for children with special needs who qualify from the ages of 3 to 21.

IDEA requires a multidisciplinary evaluation to determine if the child qualifies for special education services. This means that professionals from a variety of fields (medicine, psychology, occupational therapy, etc.) and the parents of the child collaborate to assess the child’s strengths and needs and determine appropriate educational services.

Every child eligible for special education has either an Individualized Family Service Plan (IFSP, for children birth to age 3), or an Individualized Education Program (IEP, for children age 3-21). Both programs specify the details of a child’s educational plan.

Intervention varies and is based upon the child’s individual needs. Areas that may be addressed include: speech and language, cognition, behavior, sensory-motor and academics. Settings range from home-based programs for infants to a variety of school-based classrooms for older children and adolescents.

Resources

This section provides a series of links to other resources that may be useful to some persons dealing with X and/or Y aneuploidy conditions. AXYS is aware that there is wide variability in the signs and symptoms associated with these conditions and not everyone will require the same resources. However, we’re hopeful that a number of these resources may be useful to a significant percentage of this population.

AXYS Resources for Distance Learning During COVID-19 and Beyond

AXYS Consensus Document: Educational Guidelines, IEPs, and School Services for Children with X & Y Chromosome Variations

Photo of a classroom

ADHD Symptoms in Children and Adolescents with Sex Chromosome Aneuploidy: XXY, XXX, XYY, and XXYY

Everything You Never Knew About the ADHD Brain

Secrets of the ADHD Brain: Why We Think, Act, and Feel the Way We Do

Understanding Tests and Measurements for the Parent and Advocate

National Center for Learning Disabilities

Depression and Bipolar Support Alliance (DBSA)

Think College – College Options for People with Intellectual Disability

PACER Center

Wrightslaw: Special Education Law, 2nd Edition
By Peter W.D. Wright & Pamela Darr Wright

Special Education Law, 3rd Edition
By Nikki L. Murdick & Barbara C. Gartin, et al.

Steps to Independence: Teaching Everyday Skills to Children with Special Needs
By Bruce L. Baker & Alan J. Brightman

1001 Great Ideas for Teaching and Raising Children with Autism or Asperger’s, Revised and Expanded 2nd Edition
By Ellen Notbohm & Veronica Zysk, et al.

Autism: Asserting Your Child’s Rights to a Special Education
By David A. Sherman

Functional Behavior Assessment for People With Autism: Making Sense of Seemingly Senseless Behavior
By Beth A. Glasberg

Inclusive Programming for High School Students with Autism or Asperger’s Syndrome: Making Inclusion Work for Everyone! [Paperback]
By Sheila Wagner

The Power to Spring Up: Postsecondary Education Opportunities for Students with Significant Disabilities
By Diana M. Katovitch

Realizing the College Dream with Autism or Asperger Syndrome: A Parent’s Guide to Student Success
By Ann Palmer

Self-Help Skills for People with Autism: A Systematic Teaching Approach
By Stephen R. Anderson, Amy L. Jablonski, et al.

Visual Supports for People with Autism: A Guide for Parents and Professionals
By Marlene J. Cohen & Donna L. Sloan

About Homeschool

Homeschool.com

Home School Legal Defense Association
(The HSLDA is a legal support organization that specializes in home school issues and offers some free resources. However, please be aware that they may suggest that you become a paid member to receive full service and information. Users should be aware of their model and proceed accordingly.)

The Home School Mom

Homeschool Central (Additional resources for special needs)

Time4Learning

SEA Homeschoolers (Secular, Eclectic, Academic): They hold conferences, workshops, webinars, and have a very helpful website covering most aspects of homeschooling including transitioning out of high school to whatever comes next.

Most states have Facebook groups for homeschoolers; for example Delaware has groups for all homeschoolers (Homeschool Delaware) and for specifically secular homeschoolers (Delaware Secular Homeschoolers) to offer support, organize live, in person classes, arrange meet ups and park days and field trips, organize laboratory classes, discuss scholarships, local laws, swap materials at lower cost, and more.

The Well-Trained Mind: From the author of “Rethinking School” and featuring some really innovative approaches for different types of learners, this site includes sections for children with learning differences (See the section on “Differences, Disorders, and Disabilities”) and giftedness as well as the average kid. The author, Susan Wise Bauer, literally wrote THE major book on homeschooling (“The Well Trained Mind”) and it is popular with both religious and secular families for providing ideas about thinking about education as well as practical, everyday strategies for making a homeschool plan.  The author is a professor at the College of William and Mary, homeschools her own kids, and was homeschooled herself.  Related to this site The Well-Trained Mind Academy, which offers live online classes in most middle and high school subjects for a pricey, but generally worthwhile fee.  In those classes, students receive graded papers, instructor feedback, and classroom interaction online.  The author has written some specific curricula that seems to suit kids with issues such as dysgraphia and writing difficulty, too— I’m a big fan of her elementary program, “Writing With Ease.”

Online G3 is a site for online homeschool courses for gifted kids (because yes, kids with X and Y variations can also be educationally gifted despite their learning differences— this is called being 2E, or “twice-exceptional”).  This site is unique in that it provides good course descriptions for its live, interactive classes taught by experienced teachers, then allows parents to make the decision about whether a particular class is right for their child— no expensive test or proof is required.  It is recommended that parents be realistic, as the classes will appeal more to gifted kids who tend to “drive the bus” than to reluctant learners, but for the right kid, they are fun, encouraging, interactive, varied, and challenging.

Bravewriter offers online classes and curriculum for purchase for teaching by the parent for helping anxious writers or encouraging the aspiring author. Online classes encourage kids to comment (kindly) on one another’s work, even if a particular student is only typing out one or two-sentence responses at first, and the instructors ask questions to help draw out more detailed answers, conversationally, in a message-board format.

CK-12 is a FREE website with high-quality textbooks available online, with many upper-level books including lab manuals and teacher manuals as well (also free). Because the books are online, they include embedded media. Parents can sign up for a teacher account and create a program to assign to their kids and monitor progress, or do it more informally.

There are other resources available, and one of the parents of an XXY child has offered to help other parents looking for more information. You can reach Jen Driscoll at XXYMidAtlantic@gmail.com  with questions.

Physical Education for Students with Disabilities: Wrightslaw (if page does not open in browser, remove “https” from the URL in the address bar)

7 Ways to Include a Student with Special Needs in Physical Education

Adapted Physical Education Guidelines
Note: While these guidelines are specific to California schools, we think readers may find them helpful no matter where you live.

Special thanks to the National Fragile X Foundation for the use of some content.
Disclaimer: AXYS provides the above information to assist families and professionals in providing the best, possible educational experience for children with an X or Y variation. Inclusion in this list of resources does not imply endorsement by AXYS of any product or service and parents are encouraged to fully research products and services before making any commitments or purchases.

2022-08-11T13:53:18-04:00Tags: |

Research Opportunities for X&Y Chromosome Variations

Research Opportunities for X&Y Chromosome Variations

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AXYS is pleased to provide the following list of studies that our community members may consider joining. All listed studies have been approved by an Institutional Review Board (IRB) and meet guidelines established by AXYS regarding relevancy to X&Y variations. AXYS takes no position and makes no claims as to the potential benefits of the studies, and cannot be responsible for any outcomes or unintended side effects. If interested in participating, please use the contact information in the listing.


Name/Purpose of Study: TREAT-KS: An Evaluation of a Testosterone Replacement Therapy Patient Education Material for Adolescents and Young Adults with Klinefelter Syndrome

X and Y variations being studied: 47,XXY

Genders being studied: All

Age Range: 14-25 years

Other eligibility requirements: Individuals with mosaic KS (46,XY/47,XYY) are eligible but higher order X aneuploidies (i.e., 48,XXXY and 49,XXXXY) are not. Individuals must be able to read English.

Travel required: No

Sponsoring Institution: Ann & Robert H. Lurie Children’s Hospital of Chicago, Northwestern University

Principal Investigator(s): Allison Weisman, MS, CGC

Link to a more detailed description: https://redcap.luriechildrens.org/surveys/?s=YLMNN8EYAJCWWEPK

Primary funding source(s): Northwestern University Graduate Program in Genetic Counseling

Primary Contact: Sofia Marrufo, sofia.marrufo@northwestern.edu

Date Posted: May 15, 2025

Study Flyer


Name/Purpose of Study: GALAXY Registry: Generating Advancements in Longitudinal Analysis in X&Y Chromosome Variations

X and Y variations being studied: All

Genders being studied: All

Age Range: All

Other eligibility requirements: Genetic test results confirming X&Y variation

Travel required: No

Sponsoring Institution: University of Colorado

Principal Investigator(s): Shanlee Davis, MD, PhD

Link to a more detailed description: www.galaxyregistry.org

Primary funding source(s): AXYS, Living with XXY, University of Colorado

Primary Contact: galaxy@ucdenver.edu

Date Posted: May 8, 2025


Name/Purpose of Study: The Voices Study: Learning from youth about their care needs and priorities

X and Y variations being studied: Klinefelter syndrome (47,XXY)

Genders being studied: No restrictions based upon gender

Age Range: 11-21 years

Other eligibility requirements: Diagnosis of 47,XXY/Klinefelter syndrome, must be able to understand basic sentences and questions in English, access to a web-capable device, access to an internet connection

Travel required: No

Sponsoring Institution: Children’s National Hospital

Principal Investigator(s):

Link to a more detailed description: Study flyer

Primary funding source(s): National Institutes of Health (NIH)

Primary Contact: Alejandro Todd, datodd@childrensnational.org, 301-765-5573

Date Posted: November 12, 2024


Name of Study: National Institutes of Health (NIH) Behavioral, Cognitive, and Brain Imaging Study for Girls and Young Women with Trisomy X (2 day study)

X and Y variations being studied: Trisomy X

Genders being studied: Female

Age Range: 5 to 25 years

Other eligibility requirements: 

Travel required: Yes. 2 day study near Washington, DC. Flights and lodging are provided, along with a meal allowance and participant payment.

Sponsoring Institution: National Institutes of Health (NIH)

Principal Investigator(s): Dr. Armin Raznahan

Link to a more detailed description: Children w/ X & Y Chromosome Variations | Adults w/ X & Y Chromosome Variations | Study Flyer

Primary funding source(s): National Institutes of Health Intramural Research Program

Primary Contact: Bobby Das at dasb@mail.nih.gov or 301-435-4516

Date Posted: January 15, 2020

2025-09-12T13:06:58-04:00

Prior Conferences

Every two years, AXYS sponsors a conference that brings together those with an extra X or Y chromosome variation, their parents or other family members, researchers, medical professionals and others. The conference features individual presentations, panel discussions, and plentiful opportunity for informal discussion and support on a wide range of matters relevant to our members and friends. Much of the material is of a timeless nature that can be highly informative and helpful to those new to the field.

2023 AXYS Virtual Family Conference

2021 AXYS Virtual Family Conference

2019 AXYS Family Conference, Atlanta, Georgia

2017 AXYS Family Conference, Aurora, Colorado

2015 AXYS Family Conference, Baltimore, Maryland

2013 AXYS Family Conference, Denver, Colorado

2024-07-19T15:40:03-04:00
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