NEXXYS/New England Support Group Meeting

One in a series of online meetings hosted by Ginnie Cover where she will discuss and answer questions about the following topics:

• Transition to Adulthood for Individuals with X and Y Variations, a new consensus document developed and written by Dorothy Boothe and Ginnie Cover

• Her upcoming book about a young family confronting the reality of a prenatal Klinefelter syndrome diagnosis, Supplemental Needs: A Novel

• The GALAXY registry (Generating Advancements in Longitudinal Analysis in X&Y Chromosome Variations), a repository of demographic and medical data

Rick Frith2024-02-28T13:42:40-05:00Categories: Support Group Meeting|

New York Metro/Mid-Atlantic Support Group Meeting

REGISTER HERE

One in a series of online meetings hosted by Ginnie Cover where she will discuss and answer questions about the following topics:

• Transition to Adulthood for Individuals with X and Y Variations, a new consensus document developed and written by Dorothy Boothe and Ginnie Cover

• Her upcoming book about a young family confronting the reality of a prenatal Klinefelter syndrome diagnosis, Supplemental Needs: A Novel

• The GALAXY registry (Generating Advancements in Longitudinal Analysis in X&Y Chromosome Variations), a repository of demographic and medical data

Rick Frith2024-02-28T13:39:32-05:00Categories: Support Group Meeting|

Florida Support Group Meeting

REGISTER HERE

One in a series of online meetings hosted by Ginnie Cover where she will discuss and answer questions about the following topics:

• Transition to Adulthood for Individuals with X and Y Variations, a new consensus document developed and written by Dorothy Boothe and Ginnie Cover

• Her upcoming book about a young family confronting the reality of a prenatal Klinefelter syndrome diagnosis, Supplemental Needs: A Novel

• The GALAXY registry (Generating Advancements in Longitudinal Analysis in X&Y Chromosome Variations), a repository of demographic and medical data

Rick Frith2024-02-16T14:58:49-05:00Categories: Support Group Meeting|

Upstate New York Support Group Meeting

REGISTER HERE

One in a series of online meetings hosted by Ginnie Cover where she will discuss and answer questions about the following topics:

• Transition to Adulthood for Individuals with X and Y Variations, a new consensus document developed and written by Dorothy Boothe and Ginnie Cover

• Her upcoming book about a young family confronting the reality of a prenatal Klinefelter syndrome diagnosis, Supplemental Needs: A Novel

• The GALAXY registry (Generating Advancements in Longitudinal Analysis in X&Y Chromosome Variations), a repository of demographic and medical data

Rick Frith2024-02-16T14:59:28-05:00Categories: Support Group Meeting|

Southeastern Support Group Meeting

REGISTER HERE

One in a series of online meetings hosted by Ginnie Cover where she will discuss and answer questions about the following topics:

• Transition to Adulthood for Individuals with X and Y Variations, a new consensus document developed and written by Dorothy Boothe and Ginnie Cover

• Her upcoming book about a young family confronting the reality of a prenatal Klinefelter syndrome diagnosis, Supplemental Needs: A Novel

• The GALAXY registry (Generating Advancements in Longitudinal Analysis in X&Y Chromosome Variations), a repository of demographic and medical data

Rick Frith2024-02-16T14:49:45-05:00Categories: Support Group Meeting|

GALAXY Registry: Generating Advancements in Longitudinal Analysis in X&Y Chromosome Variations

Since many of the X&Y variations are rare, we need to help doctors and researchers by having one registry where they can both add medical data and access data to craft medical articles. This will help the AXYS community get better, informed medical care. AXYS supports this registry. Dr. Shanlee Davis is the lead doctor for this project.

If you join the study, you are allowing information in your medical records to be used for research. Additionally, you have the option to complete questionnaires or join a recruitment list for future research. The registry webpage is accessed here: www.galaxyregistry.org

To learn more about this project, contact 720-777-0705 or email galaxy@ucdenver.edu.

(COMIRB# 20-0482, ; PI Dr. Shanlee Davis; funded in part by AXYS)

You can also enroll yourself/your child in the registry online without coming into clinic, click here for the eligibility and consent information.

View/Download the GALAXY Registry flyer

GALAXY Registry Dashboard

View this dashboard to see how many people are in the registry. We’re making great progress!

Rick Frith2022-11-16T14:27:55-05:00

The Need for Greater Awareness of Sex Chromosome Variations

Article Title: The Need for Greater Awareness of Sex Chromosome Variations

Author: Erin Torres, MSN, PMHNP-BC, RN-BC

Date of Publication: September 2021

From the article’s abstract: “Health care providers remain ill prepared to recognize these conditions and support patients and their families.”

Rick Frith2021-09-02T11:12:57-04:00Categories: 47,XXX (trisomy x), 47,XXY (Klinefelter), 47,XYY, 48,XXXY, 48,XXYY, All Variations, Other Variations|

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|

AXYS Activities Conduct Policy

Adopted: June 2019

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 regards to conversation, personal space and need for quiet time. We respect those differences. 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 to an individual’s employer or institution or to a law-enforcement agency. Those engaging in unacceptable behavior may also be banned from future AXYS activities or face additional penalties.

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 contract with an independent entity to manage and adjudicate reported violations of the conduct policy.

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

Rick Frith2023-08-11T13:41:55-04:00

AXYS Awarded $25,000 to Create Continuing Medical Education Course on XXY (Klinefelter Syndrome) in Adults

AXYS Board Chair Gary Glissman and Executive Director Carol Meerschaert accept the Kosloski Family Foundation Grant presented by TJ Torchia (Photo by Stuart Hasson Studios)

June 30, 2019 Atlanta, GA– The Association for X and Y Chromosome Variations (AXYS), dedicated to addressing the needs of those affected by one or more extra X and/or Y chromosomes, was presented a $25,000 check by TJ Torchia, son of Tony Torchia, CPA, Partner at RotenbergMeril, on behalf of the The Kosloski Family Foundation. The generous $25,000 grant will be used to develop an online continuing medical education (CME) course to enhance physician knowledge of 47, XXY, also known as Klinefelter Syndrome (KS).

“For 30 years AXYS has worked to increase access to the multidisciplinary care that those with X and Y variations need throughout their lives,” said Carol Meerschaert, AXYS Executive Director. “This generous grant from the Kosloski Family Foundation will support AXYS’ efforts to enhance physician knowledge of the most common X and/or Y chromosome variation, with the ultimate goal of improving the quality and accessibility of medical care for adults with Klinefelter Syndrome.”

It is estimated that nearly 500,000 individuals in the US have Klinefelter Syndrome. Because of this generous support, AXYS will create a readily accessible online program to educate healthcare professionals on the diagnosis and current standards for treatment with the goal of increasing access to care for those with 47, XXY.

“The Kosloski Family Foundation offers grants for medical education,” said Fotini Allteni, director of the Kosloski Family Foundation. Tony Torchia added, “AXYS provides information and support on Klinefelter Syndrome and it was my pleasure to connect them. My son TJ was thrilled to present this check from The Kosloski Family Foundation to AXYS during their family conference.”

AXYS will work with the members of the AXYS Clinic and Research Consortium (ACRC) to develop the CME program, assuring it will meet the needs of physicians who treat adults with KS.

About AXYS

The Association for X and Y Chromosome Variations (AXYS) is dedicated to addressing the needs of those affected by one or more extra X and/or Y chromosomes. We focus on sharing knowledge, offering support and initiating action to help improve lives of individuals and families. Learn more at genetic.org.

About the Kosloski Family Foundation

The Kosloski Family Foundation was founded in 2018 by the Estate of Helene Kosloski in honor of her beloved family. The Foundation provides support to health and human services institutions, scholarships to universities, and support for the arts.

Helene J. Kosloski was a philanthropist, respected educator and successful businesswoman. She received her Bachelor’s degree from Boston University and began her career working for the Springfield NJ School System, where she retired as principal of the middle school. After retiring, Helene took over the Kosloski family’s real estate business.

Helene made a huge impact in the State of New Jersey through philanthropic efforts to several charitable organizations, including Saint Barnabas Medical Center, The Seeing Eye, Felician University and Rutgers University.

Helene’s mother, Josephine Kosloski, was a lifelong source of inspiration to Helene. Josephine started the family’s successful real estate business setting the examples for Helene of business acumen, values, and leadership. Due to her mother’s example, Helene was able to take over and manage the business successfully and thus create The Kosloski Family Foundation in honor of her mother and family.

About RotenbergMeril

RotenbergMeril is a CPA firm with offices in the NY/NJ Metropolitan Area. According to both the NJBiz Journal and New Jersey Business Magazine, they are ranked as one of the top accounting firms based in Northern New Jersey, servicing clients across the USA and worldwide. The firm is PCAOB registered and a member of both the Center for Public Company Audit Firms, the Employee Benefit Plan Audit Quality Center, and the Forensic Valuation Services (FVS) section of the American Institute of Certified Public Accountants.

RotenbergMeril has a diversified client base of closely-held businesses, emerging public companies, high net worth individuals, trusts and estates, not-for-profits, foundations and Broker Dealers. The firm has a growing roster of emerging and mid-market SEC public companies that are listed on various exchanges, including the NYSE, AMEX and Nasdaq OTC.

Rick Frith2019-07-31T12:29:30-04:00Categories: 47,XXY (Klinefelter)|

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GALAXY Registry: Generating Advancements in Longitudinal Analysis in X&Y Chromosome Variations

GALAXY Registry Dashboard

Resources for Families and Professionals during COVID-19 and Beyond

ADHD

Autism

Educational Rights and Advocacy

Learning Differences

Motivation, Coping Strategies, Social Skills, and Behavior

Positive Parenting During COVID-19

Stress, Resilience, and Mental Health Topics

Talking with Children about Covid-19

Other Resources