Marked Increase in Incident Gynecomastia: A 20-year National Registry Study 1998-2017

Article Title: Marked Increase in Incident Gynecomastia: A 20-year National Registry Study 1998-2017

Authors: Koch, Bräuner, Busch, Hickey, and Juul

Date of Publication: July 7, 2020

“The incidence of gynecomastia has dramatically increased over the last 20 years implying that the endogenous or exogenous sex steroid environment has changed, which is associated with other adverse health consequences in men such as an increased risk of prostate cancer, metabolic syndrome, diabetes type 2 or cardiovascular disorders.”

Rick Frith2020-08-07T15:40:37-04:00Categories: 47,XXY (Klinefelter)|Tags: Gynecomastia|

Fertility management of Klinefelter syndrome

Article Title: Fertility management of Klinefelter syndrome

Authors: Fainberg, Hayden and Schlegel

Date of Publication: October 7, 2019

“Individuals with KS have a relatively good prognosis for sperm recovery compared to other men with idiopathic NOA. Surgical success is heavily dependent upon surgical technique and the experience of the andrology/embryology team tasked with the identification and use of testicular sperm.”

Rick Frith2020-07-28T13:00:03-04:00Categories: 47,XXY (Klinefelter)|Tags: Fertility|

The epidemiology of sex chromosome abnormalities

Article Title: The epidemiology of sex chromosome abnormalities

Authors: Berglund, Stochholm, and Gravholt

Date of Publication: May 11, 2020

“Sex chromosome abnormalities (SCAs) are characterized by gain or loss of entire sex chromosomes or parts of sex chromosomes with the best-known syndromes being Turner syndrome, Klinefelter syndrome, 47,XXX syndrome, and 47,XYY syndrome. Since these syndromes were first described more than 60 years ago, several papers have reported on diseases and health related problems, neurocognitive deficits, and social challenges among affected persons. However, the generally increased comorbidity burden with specific comorbidity patterns within and across syndromes as well as early death of affected persons was not recognized until the last couple of decades, where population-based epidemiological studies were undertaken. Moreover, these epidemiological studies provided knowledge of an association between SCAs and a negatively reduced socioeconomic status in terms of education, income, retirement, cohabitation with a partner and parenthood. This review is on the aspects of epidemiology in Turner, Klinefelter, 47,XXX and 47,XYY syndrome.”

Rick Frith2020-06-16T17:22:47-04:00Categories: 47,XXX (trisomy x), 47,XXY (Klinefelter), 47,XYY|

Early neurodevelopmental and medical profile in children with sex chromosome trisomies

Article Title: Early neurodevelopmental and medical profile in children with sex chromosome trisomies: Background for the prospective eXtraordinarY babies study to identify early risk factors and targets for intervention

Authors: Tartaglia, Howell, Davis, Kowal, Tanda, Brown, Boada, Alston, Crawford, Thompson, Van Rijn, Wilson, Janusz, and Ross

Date of Publication: May 13, 2020

“This study aims to better describe and compare the natural history of SCT conditions, identify predictors of positive and negative outcomes in SCT, evaluate developmental and autism screening measures commonly used in primary care practices for the SCT population, and build a rich data set linked to a bank of biological samples for future study. Results from this study and ongoing international research efforts will inform evidence-based care and improve health and neurodevelopmental outcomes.”

Rick Frith2020-06-16T17:00:13-04:00Categories: 47,XXX (trisomy x), 47,XXY (Klinefelter), 47,XYY|

Morbidity in Klinefelter syndrome and the effect of testosterone treatment

Article Title: Morbidity in Klinefelter syndrome and the effect of testosterone treatment

Authors: Chang, Skakkebæk, Davis, and Gravholt

Date of Publication: April 28, 2020

“…KS is associated with an array of health-related and socioeconomic challenges and it is becoming progressively clear that proper care for boys and men with KS reaches far beyond simply supplementing with testosterone. There are no widely implemented guidelines for KS care, and studies investigating crucial aspects of testosterone treatment in individuals with KS, including both beneficial and potentially adverse effects, have only begun to emerge during the last decades. For this descriptive review, we present an overview of literature describing health-related outcomes of testosterone treatment in KS and outline the clinical applications of testosterone treatment in KS. Collectively, beneficial effects of testosterone treatment on overall health in KS are described with few apparent adverse effects. However, larger randomized studies in adult and pediatric patients are warranted to elucidate key aspects of treatment. We stress the implementation of centralized multidisciplinary clinics and the need for a dedicated international guideline to ensure optimal care of boys and men with KS.”

Rick Frith2020-06-09T14:38:29-04:00Categories: 47,XXY (Klinefelter)|Tags: Testosterone treatment|

Sex differences in psychiatric disorders: what we can learn from sex chromosome aneuploidies

Article Title: Sex differences in psychiatric disorders: what we can learn from sex chromosome aneuploidies

Authors: Green, Flash, and Reiss

Date of Publication: January 2019

“The study of individuals with sex chromosome aneuploidies provides a promising framework for studying sexual dimorphism in neurodevelopmental and psychiatric disorders. Here we will review and contrast four syndromes caused by variation in the number of sex chromosomes: Turner syndrome, Klinefelter syndrome, XYY syndrome, and XXX syndrome. Overall we describe an increased rate of attention deficit hyperactivity disorder and autism spectrum disorder, along with the increased rates of major depressive disorder and anxiety disorders in one or more of these conditions. In addition to contributing unique insights about sexual dimorphism in neuropsychiatric disorders, awareness of the increased risk of neurodevelopmental and psychiatric disorders in sex chromosome aneuploidies can inform appropriate management of these common genetic disorders.”

Rick Frith2020-05-25T15:21:05-04:00Categories: 47,XXX (trisomy x), 47,XXY (Klinefelter), 47,XYY, Other Variations|Tags: Neuropsychiatry|

Neuropsychological functions, sleep, and mental health in adults with Klinefelter syndrome

Article Title: Neuropsychological functions, sleep, and mental health in adults with Klinefelter syndrome

Authors: Fjermestad, Huster, Thunberg, Stokke, Gravholt, and Solbakk

Date of Publication: April 29, 2020

“Altogether, men with KS display problems in neuropsychological functions and mental health but do not appear different from controls on most sleep parameters. Our findings indicate that relations between neuropsychological functions, sleep, and mental health differ between men with KS and controls.”

Rick Frith2020-05-25T14:56:13-04:00Categories: 47,XXY (Klinefelter)|Tags: Neuropsychology|

School’s out! Now what? – Distance Learning Resources

Resources for Families and Professionals during COVID-19 and Beyond

ADHD

CHADD/National Resource Council Guidance for Uncertain Times

The National Resource Center on ADHD (NRC), a program of CHADD, was established to be the national clearinghouse for the latest evidence-based information on ADHD. The NRC serves as a National Public Health Practice and Resource Center (NPHPRC) with the mission to provide information, education and consultation about assessment, diagnosis, treatment, and issues of health and well-being for children with ADHD and their families. Multiple resources relevant to setting up home learning, supporting organization and time management, and managing strong emotions during COVID-19 have been posted.

ADDitude Magazine: ADHD in a Pandemic

ADDitude provides a range of resources for families, educators, and individuals affected by ADHD with downloadable resource manuals, frequent webinars, and articles on a range of topics related to ADHD.

Autism

AFIRM COVID-19 Toolkit: Supporting Individuals with Autism During Uncertain Times

The UNC Frank Porter Graham Child Development Institute Autism Team created a comprehensive guide with visual tools and resources related to support strategies, coping and calming skills, hygiene, daily schedules and routines, communication, activities, and more.

AFIRM COVID-19 Supplemental Toolkit for Adults

This guide was developed as a response to many self-advocates and family members who reached out to our team to develop resources for adults. It is intended to centralize many different adult-specific resources and can serve as a supplement or companion guide to the Supporting Individuals with Autism through Uncertain Times toolkit. The materials are divided into four topic areas: COVID-19 Resources, Daily Living Resources, Social Connectedness Resources, and Mental Health Resources.

Cincinnati Children’s Division of Developmental and Behavioral Pediatrics Coronavirus (COVID-19) Virtual Outread Series

In partnership with the University of Cincinnati Center for Excellence in Developmental Disabilities (UCCEDD), provides training and community education to parents, caregivers, and community members on relevant topics impacting individuals with developmental disabilities and their families.

UC Davis ADEPT Parent Training

ADEPT (Autism Distance Education Parent Training) Interactive Learning is a 10-lesson interactive, self-paced, online learning module. The goal is to provide parents with tools and training to more effectively teach their child functional skills using applied behavior analysis (ABA) techniques.

Educational Rights and Advocacy

ADDitude Magazine: Your Child’s Educational Rights While Crisis Schooling: IEPs and 504 Plans in a Pandemic

DREDF provides updates on legislation and policy, sample templates for use in corresponding with districts, and articles on topics related to education and health care for individuals with disabilities. (Virtual IEP Meeting Request for COVID-19 Contingency Plan)

March 12, 2029 Questions and Answers about Providing Special Education from the Department of Education

March 21, 2020 Supplemental Fact Sheet from the Department of Education

Wrightslaw COVID-19 Parent Advocacy Fact Sheets

Learning Differences

International Dyslexia Organization: (Free, Downloadable) Dyslexia and Reading Disabilities Resource Guide for Families and Educators Affected by COVID-19

Learning Disabilities Association of America COVID-19 Resources Page

This includes several resource documents and webinars pertaining to supporting students with disabilities during COVID-19.

LD Online

LD OnLine is a national educational service of WETA-TV, the PBS station in Washington, D.C. that includes resources and articles on a range of topics related to learning disabilities as well as AD/HD.

Understood.org

Understood.org provides articles that explain learning differences and related issues in an accessible manner for families, individuals with learning differences, and professionals.

Motivation, Coping Strategies, Social Skills, and Behavior

Lives in the Balance

Dr. Ross Green’s Collaborative Proactive Solutions model offers families and school staff concrete strategies for helping understand the ‘why’ of a child’s behavior, to identify “lagging skills,” and to collaboratively come up with a plan for change. The Explosive Child Podcast, Episode 25, Collaboration in Trying Times

Making Social Learning Stick

This website includes free downloadable schedules, visual supports, articles, and videos related to supporting learners at home during COVID-19.

Social Thinking Free Stuff for Use at Home and School/Social-Emotional Support Strategies

Resources include read Aloud Books and Thinksheets, video lessons, webinars, and articles.

Zones of Regulation

Created by an Occupational Therapist, the Zones of Regulation is a framework designed to foster self-regulation and emotional control. This site includes free downloadable resources as well as free webinars showing how to adapt resources for home during Distance Learning.

Positive Parenting During COVID-19

World Health Organization Parenting During the Time of Covid-19

To help parents interact constructively with their children during this time of confinement, these 12 one-page tips for parents cover planning one-on-one time, staying positive, creating a daily routine, avoiding bad behavior, managing stress, managing anger, how to encourage play, and talking about COVID-19.

Stress, Resilience, and Mental Health Topics

American Psychological Association COVID-19 Resources

Resources from the American Psychological Association on managing stress and coping during this pandemic.

Child Mind Institute

Articles on a range of topics, including learning disabilities, autism, anxiety, depression, and mood issues.

Greater Good Guide to Well-Being During the Coronavirus

Discover science-backed practices for more resilience, connection, and well-being, with step-by-step instructions on how to implement them in your life. Articles focus on reducing stress, managing anxiety, and fostering happiness.

Greater Good Article: How to Reduce the Stress of Homeschooling on Everyone

National Suicide Prevention Lifeline

The National Suicide Prevention Lifeline provides free and confidential emotional support to people in suicidal crisis or emotional distress 24 hours a day, 7 days a week. Call 1-800-273-8255 or visit their website to chat with a crisis counselor.

Right Now I’m Fine

This free book is for anyone affected by worries, fears, discomfort, or nagging thoughts about the Coronavirus (Covid-19). This is a scary time in the world, full of uncertainty and changes. But the good news is, there are things that we can do to take good care of ourselves. This book explains what you can do to keep your mind and body calm now and during any hard time.

Talking with Children about Covid-19

My Hero is You: How kids can fight COVID-19!

With the help of a fantasy creature, Ario, “My Hero is You, How kids can fight COVID-19!” explains how children can protect themselves, their families and friends from coronavirus and how to manage difficult emotions when confronted with a new and rapidly changing reality.

National Association of School Psychologists: Helping Children Cope with Changes During Coronavirus

Traumatic Stress Network: Supporting Children During Coronavirus

Offers ways to support children and talk to them about COVID-19. This fact sheet describes how to start a conversation with children about COVID-19, correct inaccurate information, encourage children to ask questions and how to answer them, help children self-regulate, and outlines common reactions, how to stay connected, practice self-care, and what to do if you need extra help.

Why We Stay Home: Suzie Learns about Coronavirus

In this book geared to preschool-2nd grade students, Suzie is really excited to be able to stay home with her Mommy, Daddy, and older sister Millie! When Suzie expresses this to Millie, she explains to Suzie why they have been staying home with a quick lesson about the Coronavirus.

Other Resources

Special AXYS Newsletter: Resources for Distance Learning, Keeping in Touch, Staying Relaxed & More

School’s Out! Now What? Presentation Slides

Rick Frith2022-08-09T14:15:16-04:00Tags: Distance learning, Education|

The Association of Motor Skills & Adaptive Functioning in XXY/Klinefelter & XXYY Syndromes

Article Title: The Association of Motor Skills and Adaptive Functioning in XXY/Klinefelter and XXYY Syndromes

Authors: Tartaglia, Davis, Martin, Cordeiro, and Richardson

Date of Publication: December 28, 2018

“Both conditions have been previously associated with motor delays and motor skills deficits. We aimed to describe and compare motor skills in males with XXY and XXYY syndromes, and to analyze associations with age, cognitive abilities, and adaptive functioning.”

Rick Frith2020-04-21T15:12:53-04:00Categories: 47,XXY (Klinefelter), 48,XXYY|

AXYS Activities Conduct Policy

Reviewed and Updated June 2025

AXYS is committed to providing a family-friendly atmosphere at our events where all participants feel comfortable. Members of the AXYS community differ in their comfort levels with regard to conversation, personal space, and need for quiet time, and we respect that. AXYS expects all participants to enjoy a welcoming environment free from unlawful discrimination, harassment, and retaliation. We strive to be a community that welcomes and supports people of all backgrounds and identities. This includes, but is not limited to, members of any race, ethnicity, culture, national origin, color, immigration status, social and economic class, educational level, sex, sexual orientation, gender identity and expression, age, size, family status, political belief, religion, and mental and physical ability.

All participants in all AXYS conferences or other activities—whether official or unofficial—agree to comply with all rules and conditions of the activities. Your registration for or attendance at any AXYS event indicates your agreement to abide by this policy and its terms.

Expected Behavior

Model and support the norms of respect necessary to promote the conditions for healthy exchange of ideas.
Speak and conduct yourself appropriately; do not insult or disparage other participants.
Be conscious of hierarchical structures in the AXYS community, specifically the existence of stark power differentials between those of different ages—noting that fear of retaliation can make it difficult for people to express discomfort, rebuff unwelcome advances, and report violations of the conduct policy.
Be sensitive to body language and other non-verbal signals and respond respectfully.

Unacceptable Behavior

Violent threats or language directed against another person
Discriminatory jokes and language
Inclusion of unnecessary sexually explicit, violent, or otherwise sensitive materials in presentations
Posting (or threatening to post), without permission, other people’s personally identifying information online, including on social networking sites
Personal insults including, but not limited to, those using racist, sexist, homophobic, or xenophobic terms
Unwelcome solicitation of emotional or physical intimacy such as sexual advances; propositions; sexual flirtations; sexually-related touching; and graphic gestures or comments about sex or another person’s dress, body, or sexual activities
Advocating for, encouraging, or dismissing the severity of any of the above behaviors.

Consequences of Unacceptable Behavior

At the AXYS’s sole discretion, unacceptable behavior may result in removal from or denial of access to meeting facilities or activities, without refund of any applicable registration fees or costs. In addition, AXYS reserves the right to report violations from an individual can lead to criminal or civil charges, including fines, lawsuits, or even imprisonment. Those engaging in unacceptable behavior may also be banned from future AXYS activities or face additional penalties. Unacceptable behavior can significantly harm an individual’s reputation, making it difficult to find future employment or volunteer opportunities within AXYS.

What to Do if You Witness or Are Subject to Unacceptable Behavior

If you are being harassed, notice that someone else is being harassed, or have any other concerns relating to harassment, please contact the Executive Director or a Board Member. If you witness potential harm to a conference participant, be proactive in helping to mitigate or avoid that harm; if you see or hear something that concerns you, please say something.

Process for Adjudicating Reports of Misconduct

AXYS will reserve the right to consult with an independent entity to manage and adjudicate reported violations of the conduct policy.

Political Neutrality

AXYS is a nonpartisan organization and maintains strict political neutrality. To ensure a respectful and inclusive environment, discussions or expressions of political views, party affiliations, or support for political candidates are not permitted in any organizational setting, including meetings, events, and communication channels. Employees, volunteers, and representatives are expected to refrain from political discussions while acting in any capacity on behalf of the organization.

Note: This Code of Conduct may be revised at any time by AXYS and its terms are non-negotiable.

Rick Frith2025-07-17T17:29:13-04:00