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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.”

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2020-05-25T14:56:13-04:00Categories: 47,XXY (Klinefelter)|Tags: |

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

2022-08-09T14:15:16-04:00Tags: , |

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.”

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2020-04-21T15:12:53-04:00Categories: 47,XXY (Klinefelter), 48,XXYY|

AXYS Activities Conduct Policy

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.

2025-07-17T17:29:13-04:00

The Lived Experience of Klinefelter Syndrome: A Narrative Review of the Literature (Psychosocial and Quality of Life Impact)

Article Title: The Lived Experience of Klinefelter Syndrome: A Narrative Review of the Literature

Authors: Hanna, Cheetham, Fearon, Herbrand, Hudson, McEleny, Quinton, Stevenson, and Wilkes

Date of Publication: November 26, 2019

“This review examines the existing psychosocial evidence around the impact of KS, exploring what we know about KS and its relevance for health care for this group.”

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2020-02-18T11:01:00-05:00Categories: 47,XXY (Klinefelter)|Tags: |

Sperm retrieval rates in non-mosaic Klinefelter patients undergoing testicular sperm extraction

Article Title: Sperm retrieval rates in non-mosaic Klinefelter patients undergoing testicular sperm extraction: what expectations do we have in the real-life setting?

Authors: Boeri et al

Date of Publication: January 30, 2020

“A recent meta-analysis (Corona et al, 2017) reported positive sperm retrieval rates (SRR) in 50% of patients with Klinefelter syndrome (KS) undergoing testicular sperm extraction (TESE). However, these results do not reflect the rates of SR that we observe in clinical practice. We assessed the rate and potential predictors of SR in Klinefelter patients in the real-life setting.”

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2020-02-17T21:18:40-05:00Categories: 47,XXY (Klinefelter)|
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