Talks and Lectures
Conference and webinar presenters share their professional and personal opinions and experiences. These opinions and experiences are the presenters’ own and do not necessarily represent the AXYS organization.
Professional Advisory Committee
The following medical professionals have agreed to serve on the AXYS Professional Advisory Committee (PAC), charged with advising the AXYS board and staff on an as-needed basis:
Sharron Close, PhD (Chair), Emory University
Ricki Lewis, PhD, Adjunct Professor of Medical Education, Alden March Bioethics Institute, Albany Medical College
Susan Howell MS, CGC, MBA, Genetic Counselor and Coordinator, The eXtraordinarY Kids Clinic, Colorado Children’s Hospital
Jeannie Visootsak, MD, Developmental Pediatrician
Nicole Tartaglia, MD, Associate Professor, University of Colorado Medical School
Amy Talboy, MD, Emory University Department of Human Genetics
Sheryl Rimrodt, MD, Developmental Pediatrician
Ilene Fennoy, MD, MPH, Professor, Columbia University School of Medicine
Judith Ross, MD, Professor, Thomas Jefferson School of Medicine, Columbia University School of Medicine
Alan Rogol, MD, Pediatric Endocrinology University of Virginia (retired)
Adrian Dobs, MD, Professor, Johns Hopkins University School of Medicine
Robyn Robinson, CPNP-PC, Pediatric Nurse Practitioner and Parent/Advocacy Leader
Allan Reiss, MD, Robbins Professor and Director, Stanford University Center for Interdisciplinary Brain Sciences Research
Arlene Smaldone, PhD, CPNP-PC, Assistant Dean of Scholarship and Research, Columbia University School of Nursing
Lois Sadler, PhD, PNP-BC, FAAN Professor, Yale School of Nursing
Virginia Cover, MSW, MPH, Social Worker, Parent and Author
Eric Viliain, MD, PhD, Professor of Human Genetics, Pediatrics and Urology, University of California, Los Angeles
Kristy Martyn, PhD, PNP-PC, FAAN Professor of Nursing, Nel Hodgson Woodruff School of Nursing
David Marcus, PhD, Assistant Professor Neuropsychology Emory University
A Guide to Special Education Services in Texas
Title: IDEA – The Manual for Parents and Students About Special Education Services in Texas
Date of Publication: September 2011
Mortality in Patients with Klinefelter Syndrome in Britain: A Cohort Study
Article Title: Mortality in Patients with Klinefelter Syndrome in Britain: A Cohort Study
Authors: Anthony Swerdlow, Craig Higgins, Minouk Schoemaker, Alan Wright, and Patricia Jacobs
Date of Publication: December 1, 2005
“Patients diagnosed with Klinefelter syndrome have raised mortality from several specific causes. This may reflect hormonal and genetic mechanisms.”
Support Groups and Regional Get Togethers
AXYS supports our community with in person and online groups. These groups are facilitated by volunteers who schedule the programs and often arrange for speakers on topics of interest to individuals and families affected by X & Y variations. These groups offer the opportunity to share experiences with others and to learn about resources that they have found valuable. Some of our groups meet at AXYS Clinic and Research Consortium clinics. Other groups meet in libraries, medical centers, or parks.
AXYS has official online support groups for each variation. AXYS also shares information about other groups, both in person and online, that may be helpful to our community.
Registration for or indication to attend any AXYS event indicates your agreement to abide by the AXYS Activities Conduct Policy.
National Support Groups Serving All X & Y Variations
Contact: Tina Hanif, Thanif0705@ymail.com
AXYS Florida Support Group on Facebook
Next Support Group Meeting:
TBA
Our support group helps families who have been newly diagnosed, toddlers, kids, teens and adults living with X and Y variations. We currently offer education workshops with our local school districts, as well as community and education outreach. We also offer assistance with IEPs and Regional Center advocacy, provide support groups for all ages, hold an annual picnic, and support research through fundraising activities.
This group is currently transitioning to new leadership. For support in the Los Angeles area, contact info@genetic.org.
(DE, Washington, DC, MD, NJ, NY, PA, VA & WV)
Serving all X&Y chromosome variations
AXYS Mid-Atlantic Support Group on Facebook
Contact: Stefan Schwarz, sschwarz13@gmail.com
Next Support Group Meeting:
TBA
AXYS Midwest Support Group
New York Area Support Group for X and Y Chromosome Variations
(XXY, XYY, Trisomy X, XXYY, XXXXY, Tetrasomy X, XXXY, Pentasomy X)
Contact: Avrin Slatkin, aslatkin@hotmail.com
NY Tristate KS/SCA Support Group on Facebook
Next Support Group Meeting:
TBA
This support group is for all X and Y chromosome variations.
Open to those within driving distance of Denver, Colorado, including those in Utah, New Mexico, Wyoming and Western Nebraska.
AXYS Rocky Mountain Support Group on Facebook
Support Group Meetings
AXYS Community Monthly Open House | 2nd Tuesday of the Month | Zoom
For a link to the Zoom meeting, please email Rob & Jamie Lee at axysrockymountain@gmail.com or contact them via the Facebook group: facebook.com/groups/axysdenver
Group Leaders: Eric, Katie, & Lauren | SFBay@genetic.org
San Francisco Bay Area Support Group on Facebook
Next Support Group Meeting:
TBA
Purpose: This group will provide support to those families and individuals with X and Y variations who are in search of more information in NC, SC, GA, AL, FL, TN, MS and KY. We will provide support group meetings at various locations in and around Atlanta, GA and occasionally have social events in more comfortable venues for fun for all.
Contact: Dorothy Boothe, theboothefamily@yahoo.com
Next Support Group Meeting:
TBA
We’re starting a Texas Support Group for all ages and all X&Y variations.
Next Support Group Meeting:
TBA
For more information, contact: Rebecca Kaus, regeiger78@yahoo.com
Twin Cities Support Group on Facebook
Next Support Group Meeting:
TBA
Meets twice per year.
Contacts
Group Leader: Carrie Riby, carrieriby@gmail.com or 585-256-1638
Support volunteer for individuals with 47,XXY/KS: Caleb Donath, cbd021@gmail.com
Next Support Group Meeting
TBA
International Support Groups Serving All X & Y Variations
Condition-specific Groups
47,XXY
47,XYY
47,XXX
Trisomy X/Triple X/XXX Global Support Group on Facebook
If you would like to request to join the group or simply talk, please message the administrator.
Next Support Group Meeting
Trisomy X Support Group – All Ages
August 24 @ 1pm EDT
We ask that all attendees please adhere to the AXYS Activities Conduct Policy.
4th Massachusetts Area States Trisomy X Support Group Meeting
Massachusetts Area States Trisomy X Support Group
“Taking it to the MaXXX”
Come Join Us
Contact: Joanne Burke, Parent of Jessica Burke (Trisomy X), age 19
Jomamaburke@comcast.net
Support Group News
Joanne Burke presents the 2019 Massachusetts Proclamation for X & Y Chromosome Variation Awareness Month.
November 12, 2018
Dear Families,
Thank you for joining us this fall for the 4th Massachusetts Area States Trisomy X Support Group meeting. It was such a pleasure to welcome and meet some new Trisomy X girls and families. We had 10 girls/women with Trisomy X and families traveling from all different areas of Massachusetts. We started our meeting with round table discussions with Sharron Close, live from eXtraordinarY Clinic Department of Human Genetics and Pediatrics, Emory University School of Medicine. Many families asked questions and participated in the discussions. We then met as a whole group, welcoming and introducing the girls and women with Trisomy X. The older girls/women with Trisomy X met privately with the younger girls to discuss any questions or issues that they may have. It was described as a “nice bonding experience among each other.” We had lots of great food and desserts. I would like to thank everyone for bringing food/drink items to share. I would like to thank Andrea for helping to organize the event and her endless support to our girls/women with Trisomy X. Andrea also leads the Facebook Support group for only girls and women with Trisomy X. I would also like to thank Eileen, Jim, Kayla and Sunshine for helping with organizing the meeting, setting/cleaning up and bringing activities for the children. Lastly I would like to thank my family for assisting with planning the meeting especially my daughter Jessica. I was impressed with Jessica and the women with Trisomy X who came to the meeting on their own, willing to share their stories and answer questions. It is always heart warming to see girls and women with Trisomy X meet others with Trisomy X for the first time! These girls/women are amazing and beautiful in every way! Thank you to AXYS for their continued support and providing us with the latest information and research opportunities.
I am looking forward to our continued meetings. I am open to suggestions for group outings and activities to do together as well. I have attached the contact list so everyone can reach out and communicate with each other. Please feel free to reach out to me anytime and if you learn of new families please along their contact information.
Thanks again to each and everyone for coming and sharing your wonderful stories and support.
Our Best to All,
Joanne Burke and Jessica (Trisomy X age 19)
Trisomy X- A Group Just For Us on Facebook
This is a Facebook group exclusively for women and young adults with Trisomy X. Expect to be messaged by the administrator before your request to join the group is accepted.
Trisomy X support group
Location: Toronto, Canada
If you are a member of the AXYS Trisomy X/Triple X/XXX Global Support Group, email Michelle Buckley at m.buckley40@hotmail.com for additional information.
The group is being organized by a parent of a child with Trisomy X.
This is an informal group. Please bring your daughters with you. All children welcome.
48,XXYY
48,XXXY
Start an AXYS Group
Don’t see a group near your home? We will help you organize a group. You can get together one time or hold regular meetings.
Groups are started by committed volunteers. If you are interested in organizing a group, please send an email to info@genetic.org.
Reasons to consider forming a local group:
- Create a network of people concerned about X and Y variations
- Bring together the collective wisdom of people who have experienced similar challenges
- Create a group that can make a difference in your community
- Offer the lived experience perspective to legislators, the local medical community and educators
Some of the ways that AXYS will assist your local group include
- Set up registration for the meeting(s) and collect donations to support the event(s).
- Publicize meetings on the AXYS website, via blast emails, in our newsletter and on AXYS Facebook pages
- Use of AXYS webinar software to hold virtual meetings or feature a remote speaker
- Referrals to your group via AXYS’s Helpline and ACRC Clinics.
Many groups have found that a meetings with a speaker and group discussion, and social events such as picnics or meetings at restaurants work best to build a strong network. Current group leaders are happy to mentor new volunteers.
We look forward to hearing from you and having you fostering connections in your local AXYS community.
Videos
This chart contains all of the videos that are found on the AXYS YouTube Channel. This chart makes it easy to search for what you want to watch. To use the search this table box: type in the speaker, topic or condition for which you want to see videos.
Video | Speaker(s) | Relevant Variation |
|---|---|---|
Initial Data from the GALAXY Registry: Generating Advancements in Longitudinal Analysis in X & Y Chromosome Variations | Susan Howell, MS, MBA, CGC and Kayla Molison, BA | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Discovery & Exploration (discovering skills and employment opportunities) | Tricia Zeltwanger, CESP | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
An Interview with Josh Griffin: His Experience with 47,XXY | Josh Griffin | XXY |
| Updates on the eXtraordinarY Babies Study (2023) | Nicole Tartaglia, MD and Susan Howell, CGC | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Research Partnership: The GALAXY Registry | Shanlee Davis, MD, PhD and Alexa Carl, MPH | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Gender identity, gender questioning, and gender dysphoria in KS/XXY | Claire Harkin and Prof. James Elander | XXY |
First Giggles to First Words ( Language Skills ) | Michele Martinez-Chadrom, MA, CCC-SLP | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Temperament in Infants with X&Y Chromosome Trisomies | Megan Louderman, PsyD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Supplemental Needs: A Novel About X/Y Variations | Ginnie Cover, MSW, MBA | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Government Benefits (SSI, SSDI, SNAP, Medicaid, and more) | Ginnie Cover, MSW, MBA | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Gender Identity in Klinefelter Syndrome | Tet Yap | XXY |
Understanding the Phenotypic Spectrum and Family Experiences of XYY | Rachel Gore, ScM, CGC and Colleen Jodarski, MGC, CGC | XYY |
Trisomy X: A Review and Care Update for Families and Health Care Providers | Kristen Wigby, MD | Trisomy X |
Social and emotional function in boys and teens with KS | Allan Reiss, MD, Lara Foland-Ross, PhD, and Andrea Joan Funtila, BS | XXY |
Brain structure and function in boys and teens with Klinefelter syndrome | Allan Reiss, MD and Lara Foland-Ross, PhD | XXY |
Diabetes in Klinefelter Syndrome | Andrea Mucci, MD | XXY |
Finding Self Acceptance | Matt McKeon, MS, CCC-SLP & Hannah Acevedo, MS, LEP, ABSNP, BCBA | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
| State of Fertility in XY Chromosome Variations: What you should know in 2023 | Hooman Sadri, MD, PhD | XXY, Trisomy X |
| How We Did It - Lessons from XXYY parents on how to get traction | Nicole Tartaglia, MD and John Sloss | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
| Anxiety in Children and Adolescents with X&Y Chromosome Variations | Caitlin Middleton, PhD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
| Top 5 Parent Concerns about Executive Functioning | Jennifer Janusz, PsyD and Ashley Nguyen-Martinez, PsyD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
| Dr. T’s 5 Main Areas to Consider When Deciding Whether to Start Treatments | Nicole Tartaglia, MD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
| Autism and X/Y Variations: How Do They Overlap? | Nicole Tartaglia, MD and Rebecca Wilson, PsyD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
| X- vs Y- Chromosome Influences on Human Behavior | Srishti Rau, PhD | XXY, XYY |
| Get Moving! Strategies for Stimulating Motor Skills & Physical Activity | Shanlee Davis, MD, PhD and Syd Martin, MS, OTR/L | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
| Beyond Hormones: medical conditions & physical symptoms in X/Y variations | Nicole Tartaglia, MD and Shanlee Davis, MD, PhD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
| Why I Hired a Workforce Nobody Else Would | Randy Lewis | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
| Exactly what do you mean by “developmental delay?” | Nicole Tartaglia, MD and Talia Thompson, PhD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Metabolic Issues in XXY | B. Michelle Schweiger, DO, MPH | XXY |
Medical Problems and Medical Follow-Up in XXYY Syndrome | Nicole Tartaglia, MD | XXYY |
Adults’ Perspective on 47,XXY | David Wright, Zell Lundberg, and David Davis | XXY |
Brain Development in Klinefelter Syndrome | Allan Reiss, MD | XXY |
Cognition in Klinefelter Syndrome | Kyle Boone, PhD, ABPP-ABCN | XXY |
The Impact of Triple X Syndrome on Psychological Functioning | Drs. Marit Bierman | Trisomy X |
Getting Through the Day: The Impact of Klinefelter Syndrome on Psychological Functioning | Drs. Marit Bierman | XXY |
Clinical Characteristics and Modern Model of Management | Peter J. Stahl, MD | XXY |
Health and Development in Trisomy X Syndrome | Nicole Tartaglia, MD | Trisomy X |
Testosterone Treatment of Adult Men with 47,XXY | Adrian Dobs, MD, MHS | XXY |
Growth and Development in XXYY Boys | Rodolfo Rey, MD | XXYY |
Trisomy X Panel and Q&A | Rebecca Wilson, PsyD | Trisomy X |
Testosterone Replacement Therapy in Adult Males | Jay Newmark, MD | XXY |
Infertility Treatment for Men with 47,XXY | Peter Schlegel, MD | XXY |
Medical Problems and Medical Follow-up in XYY Syndrome | Nicole Tartaglia, MD | XYY |
Adult Curiosities and Consequences | Sharron Close, PhD, MS, CPNP-PC, FAAN | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Quality of Life and Testosterone in Klinefelter Syndrome | Sharon Close, CPNP-PC and Ilene Fennoy, MD | XXY |
Health and Development in XYY | Jeannie Visootsak, MD | XYY |
Speech and Language Deficits in Klinefelter Syndrome | Nancy Lazerson, MA, CCC-SLP | XXY |
Mental Health: Issues and Challenges in XYY | Erin Torres, MSN, CRNP | XYY |
How to Keep Your Cool Around Disruptive Behaviors | Tracy Prout, PhD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
The Endocrinology of Klinefelter Syndrome Throughout Childhood | David W. Cooke, MD | XXY |
2012 Survey Results: Living with 47,XXX | Virginia Cover, MSW | Trisomy X |
Trisomy X Syndrome: An Overview | Nicole Tartaglia, MD and Susan Howell, MS, MBA, CGC | Trisomy X |
Promoting Good Health in Adults with XXY | Adrian Dobs, MD, MHS | XXY |
IEP and 504 Plans for Students with X and Y Variations | Peter Wright, Esq | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
2012 Survey Results: Living with 47,XXY | Virginia Cover, MSW | XXY |
Development and Behavior in Children with X&Y Chromosome Variations | Nicole Tartaglia, MD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
47,XXY: An Overview of What We Know | Philip Zeitler, MD | XXY |
ADHD in X and Y Chromosome Variations | Nicole Tartaglia, MD and Natalie Ayari | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
AXYS Association for X and Y Chromosome Variations - Introductory Video | AXYS | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Auditory Processing and My Child with an X/Y Chromosome Variation | Jay Lucker, EDD, CCC-A/SLP, FAAA | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Disclosing the Diagnosis | Susan Howell, MS, MBA, CGC | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Your Child with 47,XXY: What to Expect During Puberty | Ilene Fennoy, MD | XXY |
The Cognitive and Behavioral Phenotype Of 47,XXY And 47,XXX | Sophie van Rijn, PhD | XXY, Trisomy X |
X&Y Chromosome Variations from Birth to Age 5 | Nicole Tartaglia, MD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Understanding Communication Disorders | Matt McKeon, MS, CCC-SLP | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Klinefelter Syndrome - Developments in Research Regarding Infertility | Peter Schlegel, MD | XXY |
Dr. David Hong Reads Gregory and his Extra X | David Hong, MD | XXY |
Epidemiology of Sex Chromosome Abnormalities | Claus Gravholt, MD, PhD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Risk for Early Ovarian Failure in Girls with Trisomy X Syndrome | Nicole Tartaglia, MD, MSCS, Shanlee Davis, MD, PhD, and Susan Howell, CGC, MS, MBA | Trisomy X |
47,XXY Fertility | Pravin Rao, MD | XXY |
The NIH Study on X and Y Chromosome Variations | Armin Raznahan, MD, PhD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Disclosing the Diagnosis in X and Y Variations | Susan Howell MS, CGC, MBA | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Social and Emotional Functioning in Children with Klinefelter Syndrome | Lara Foland-Ross, PhD and Allan Reiss, MD | XXY |
Testosterone Therapy in Adolescents and Young Adults with 47,XXY | Phillip S. Zeittler, MD, PhD | XXY |
Infants and Children with Klinefelter Syndrome: Hormones and Development | Ilene Fennoy, MD | XXY |
Research Aims: TRIXY National Center of Expertise | Sophie van Rijn, PhD | XXY, XYY, Trisomy X |
Making Medication Decisions | Nicole Tartaglia, MD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
The Biology of Sexual Orientation and Gender Identity | Eric Vilain, MD, PhD and Cisco Sanchez, MD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
2017 Aurora, CO Conference Keynote Address | Nicole Tartaglia, MD and Sharron Close, PhD, MS, CPNP-PC | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Gene Function, Brain Development and Behavior | Armin Raznahan, MD, PhD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Brains, Genes, & Puberty: Testosterone Replacement in XXY | Allan Reiss, MD & Vanessa Alschuler | XXY |
The NIMH Study on X & Y Chromosome Variations | Armin Raznahan, MD, PhD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Understanding the ABCs of Behavior in Children | Elizabeth Coan, PsyD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Erin Torres Reads Elizabeth and her Extra X | Erin Torres, MSN, CRNP | Trisomy X |
Growth and Development in XYY Boys | Rodolfo Rey, MD | XYY |
Promoting Language and Learning: Children with X&Y Chromosomal Variations | Natalia A. Krum, BCBA | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Transition to Adulthood | Cory Nourie, MSS, MLSP | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Metabolic Syndrome in X and Y Variations | B. Michelle Schweiger, DO, MPH | XXY |
Fertility in X & Y Chromosomes Variations 2018 | Hooman Sadri-Ardekani, MD, PhD and Stanley Kogan, MD | XXY |
Sex And Gender: What the Data Tells Us About Klinefelter Syndrome | Al Rogol, MD and Sharron Close, PhD, MS, CPNP-PC | XXY |
Online Safety for Individuals with X & Y Variations | Larry Dubin, JD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
eXtraordinarY Kids Research in Colorado | Nicole Tartaglia, MD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Engaging the X & Y Chromosome Variation Community in Research | Nicole Tartaglia, MD and Shanlee Davis, MD, PhD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Reprise: Adults with XXY | David Wright | XXY |
The Neuropsychological Evaluation and What It Can Tell Parents | David Marcus, PhD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Secondary copy number variants in people with a sex chromosome trisomy | Hayley Mountford, PhD | XXY, XYY, Trisomy X |
Environmental Factors and Individuals with an Extra X Chromosome | Sophie van Rijn, PhD | XXY, Trisomy X |
Dr. Nicole Tartaglia Reads Kyle and His Extra X and Extra Y | Nicole Tartaglia, MD | XXYY |
Health and Fitness in X & Y Variations | Shanlee Davis, MD, PhD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Government Benefits for Adults with Extra X & Y Chromosomes (2017) | Virginia Cover, MSW | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Introduction + Presentation: Fertility in Klinefelter syndrome | Peter Schlegel, MD | XXY |
Independent Living: Life After High School | Sharon Heller | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Streams of Development and Behavior in XXY | Jeannie Visootsak, MD | XXY |
College for those with learning differences in the X & Y variation community | Rachel Masson and Ferne Bork | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Parental Advocacy for Children with Sex Chromosome Aneuploidies | Jordan P. Richardson | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Successful Strategies for Home and Community Participation | Audrey Zapletal, MS, OTRL | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Dr. Lilian Cohen Reads Jack and his Extra Y | Lilian Cohen, MD, MPH | XYY |
Transition to Adulthood | Cory Nourie, MSS, MLSP | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Psychiatric and Neurodevelopmental Comorbidities in XXY | Erin Torres, MSN, CRNP and Srishti Rau, PhD | XXY |
Understanding Executive Functions | ennifer Janusz, PsyD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Navigating the Mental Health System: A Guide to Treatment Options | David Hong, MD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Anxiety about COVID: Developing Resilience During a Pandemic | David Hong, MD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Behavior Problems, Temper Tantrums, Meltdowns and Outbursts | Karen Riley, PhD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
What Parents Need to Know About Their Child's Development | Amy Talboy, MD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Understanding Language Development and Interventions | Jacqueline Frazier, MA, CCC-SLP | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Social Skill Challenges, Toddlers to Teens | Rebecca Wilson, PsyD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Auditory Processing in Children With X and Y Chromosome Variations | Jay Lucker, EDD, CCC-A/SLP, FAAA | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
How to Talk to Your Child About His/Her Diagnosis | Nicole Tartaglia, MD and Rebecca Wilson, PsyD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Is There Androgen Deficiency in Childhood in Boys with 47,XXY? | Judith Ross, MD | XXY |
Welcome to the 2019 AXYS Family Conference | Carol Meerschaert | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Sex Chromosome Variation: Genes, Environment, Brain and Behavior | Allan Reiss, MD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
X&Y Chromosome Variations & Immune System Health | Ram Raj Singh, MD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Neurodevelopmental and Medical Risks: X&Y Chromosome Variations | Nicole Tartaglia, MD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Executive Functioning: How to Help Children with Challenging Behavior | Lisa Jacobson, PhD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
X&Y Chromosome Variation - New Views from Brain Imaging | Jay Giedd, MD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
The eXtraordinarY Kids Clinic | Nicole Tartaglia, MD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
A Roadmap for Advancing Knowledge and Clinical Practices (BGAP Study) | Allan Reiss, MD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
AXYS Performance Event | Michael Palumbo | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Androgen Therapy for Male Adolescents | Alan Rogol, MD, PhD | XXY |
Heart Health in People with Klinefelter Syndrome | Frances High, MD, PhD | XXY |
Executive functioning in adolescents with XXY: Results from the BGAP Study | Vanessa Alschuler | XXY |
Seizure Management in X and Y Chromosome Variations | Elizabeth Berry-Kravis, MD, PhD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Medications for Behavioral and Emotional Challenges in Children and Adolescents | Nicole Tartaglia, MD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Educational Q&A - School's out! Now what? | Hannah Acevedo-Schiesel MS, LEP, ABSNP, BCBA, Dorothy Boothe, PhD and Erin Frith, MEd | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
How Research Can Benefit Families and Patients | Rebecca Wilson, PsyD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Intro + Presentation: Testosterone treatment in Klinefelter syndrome | Claus H. Gravholt, MD, PhD | XXY |
Reprise: Adults with XXY | Zell Lundberg | XXY |
Intro + Presentation: Early Intervention for Young Children with X&Y Variations | Talia Thompson, PhD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Government Benefits for Adults with X and Y Chromosome Variations (2015) | Virginia Cover, MSW | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Meet the AXYS Board of Directors | Various | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
AXYS Executive Director Carol Meerschaert talks about our 2021 Virtual Family Conference | Carol Meerschaert | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Planning and Preparedness: Coping with Adversity and Crisis | Rhesia-Maria Ochoa | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Clinical Trials in X and Y Variations: Doing Research that Matters | Shanlee Davis, MD, PhD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
What is Testosterone? What is TRT? | Shanlee Davis, MD, PhD | XXY |
Growing Sperm in Nude Mice - From A Futuristic Dream to Reality | Alex Travis, VMD, PhD | XXY |
Speech-Language Intervention: Goals and Expectations | Jackie Frazier, MA, CCC-SLP | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Living With Loss and Grief | Lori Earl | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
The Journey Through the Educational Process | Karen Riley, PhD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Neurodevelopment from Birth to Young Adulthood in X&Y Chromsome Variations (2015) | Nicole Tartaglia, MD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Intro + Presentation: Conversation Skills for Adults | Jasper Estabillo, PhD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Working the Room: Advocacy You Can Use | Sharron Close, PhD, MS, CPNP-PC and Dorothy Boothe, PhD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Research Updates in X&Y Chromosome Variations (2013) | Nicole Tartaglia, MD, Sharron Close, PhD, MS, CPNP-PC, Ram Raj Singh, MD, and Jay Giedd, MD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Emotional Regulation | Leela Morrow, PsyD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Sensory Processing Challenges and Participation in Home and School Activities | Audrey L. Zapletal, MS, OTR/L | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Legal and Law Enforcement Issues For Adolescents and Adults | Phyllis Quatman and Gary Glissman | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
A Student’s Right: Tuition Reimbursement for Private School | Tom Davis, Esq | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Latest findings & future plans from the NIMH study of X/Y chromosome variations (2021) | Armin Raznahan, MD, PhD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
How Did This Happen? Genetics 101 | Susan Howell, MS, MBA, CGC | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Endocrine Issues Related to X&Y Chromosome Variations | Philip Zeitler, MD | XXY |
Depression: Diagnosis & Treatment in Persons w/ X/Y Variation | Allan Reiss, MD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Tools for Teaching Social Boundaries to Tweens, Teens, and Young Adults | Hannah Acevedo-Schiesel MS, LEP, ABSNP, BCBA | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Intro + Presentation: Physical Function, Psychosocial Health, QOL in XXYY Individuals | Amy A. Blumling, PhD, CPNP-PC | XXYY |
2015 State of the Science: Updates in X&Y Chromosome Variation Research | Panel Discussion | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Synchrony of Literacy Development Among Individuals with an Extra X Chromosome | Mina Avery, MEd | XXY, Trisomy X, XXYY, XXXY, Other Variations |
Fertility and Ovary Function in Trisomy X | Shanlee Davis, MD, PhD | Trisomy X |
Work Incentives for People with Disability Benefits | David Mitchell | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Practical Solutions for eXtraordinarY Circumstances (Part 1 of 2) | Rebecca Wilson, PsyD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Prenatal testing for X&Y Variations (Extended Presentation) | Rama Kastury, DO | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
How to Talk to Your Child about His or Her Diagnosis | Nicole Tartaglia, MD, Susan Howell, MS, MBA, CGC, Aaron Bornstein and Hillary Ellis | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Roadmap to Research | Sharron Close, PhD, MS, CPNP-PC, FAAN | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Supporting the Development of Planning and Organizational Skills | Christa Hutaff-Lee, PhD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Introduction to the Americans with Disabilities Act | David Knight, Esq | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Learning Problems: Viewed Through a Life Course Lens | Sheryl Rimrodt-Frierson, MD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Patterns of Mental Health Risk in X/Y Variations | Srishti Rau, PhD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
2013 AXYS Family Conference Interviews | Various | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Occupational Therapy Treatment | Sydney Martin, MS, OTR | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
When Others Don't Get It: Looking into the Future for X&Y Chromosome Variations | Sharron Close, PhD, MS, CPNP-PC, FAAN | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Whole Genome Sequencing and Genetic Counseling for X&Y Variations at NIH | Michael Setzer, ScM, CGC | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Behavioral Considerations for X&Y Chromosome Differences | Rebecca Wilson, PsyD, E.G. Bozorgpour, PhD, and Jamie Blume, PsyD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Special Education and Disablility Advocacy: Sooner, Not Later | Stephanie James, JD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Introduction to the new Clinical Registry, GALAXY | Shanlee Davis, MD, PhD and Susan Howell, MS, MBA, CGC | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Strategic Planning and Resources for Crisis Prevention and Intervention | R. Maria Ochoa, LCSW | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Can We Direct Spermatogonia Toward Normal Development? | Paula Cohen, PhD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Resources and What You Need to Know (Government Programs and Services) | R. Maria Ochoa, LCSW | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Intro + Presentation: Coping with Anxiety Disorder | David Hong, MD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Practical Solutions for eXtraordinarY Circumstances (Part 2 of 2) | Rebecca Wilson, PsyD | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Literacy Development Among Individuals with X&Y Chromosome Variations | Donald Bear, PhD and Mina Avery, MEd | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Intro + Presentation: Transition from pediatric to adult-oriented medical care | Andrew Dwyer, PhD, FNP-BC, FNAP, FAAN | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
A Synchrony of Literacy Development Among Individuals with an Extra X Chromosome (Part 2) | Mina Avery, MEd | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
Prenatal testing for X&Y Variations Q&A | Rama Kastury, DO | XXY, XYY, XXYY, Trisomy X, XXXY, Other Variations |
AXYS Klinefelter Syndrome in Adults CME Course Introduction | Carol Meerschaert | XXY |
AXYS Klinefelter Syndrome in Adults CME Course: Lesson 1 | History, Prevalence, Phenotype | Gary Glissman, RN | XXY |
AXYS Klinefelter Syndrome in Adults CME Course: Lesson 2 | Diagnosis | Hooman Sadri, MD, PhD | XXY |
AXYS Klinefelter Syndrome in Adults CME Course: Lesson 3 | Physical and Mental Comorbidities | David Hong, MD | XXY |
AXYS Klinefelter Syndrome in Adults CME Course: Lesson 4 | Multidisciplinary Health Management | Sharron Close, PhD, MS, CPNP-PC, FAAN | XXY |
AXYS Klinefelter Syndrome in Adults CME Course: Lesson 5 | Fertility Treatment | Stuart Howards, MD | XXY |
Conference and webinar presenters share their professional and personal opinions and experiences. These opinions and experiences are the presenters’ own and do not necessarily represent the AXYS organization.
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AXYS wants you to stay connected to news regarding research, treatment, education and therapy for X and Y variations. We also want to alert you to upcoming support group meetings in your area, and to send you a periodic online newsletter. Please use the following link to provide us with your name and email address. The form will ask you which variations you want to hear about and your, or your child’s, year of birth. This will help us let you know about opportunities to participate in research that specify an age range. Please also provide us with your postal address so we can send you an informational brochure specific to the condition of concern to you, and which you can share with others. Once or twice a year we may also send you a fundraising letter because, after all, that’s how nonprofit organizations like AXYS survive and prosper!
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Sex Chromosome Variations (Article from Exceptional Parent Magazine)
This is an article written by AXYS board member Ginnie Isaacs Cover, MSW, MBA for the July 2017 issue of Exceptional Parent magazine. It provides some general information on sex chromosome variations and highlights certain challenges parents can face in getting the appropriate care and assistance for their child.
On Noninvasive Prenatal Screening
“ACMG Releases Updated Position Statement on Noninvasive Prenatal Screening (NIPS) for Detection of Fetal Aneuploidy”—The American College of Medical Genetics and Genomics (ACMG), released a new position statement on July 28, 2016 that expands upon its 2013 recommendations on the use of NIPS in prenatal care. “ACMG continues to stress that NIPS is a screening rather than a diagnostic test and positive results should be followed by a diagnostic test such as chorionic villus sampling or amniocentesis,” wrote the paper’s lead author. Click Here.