Search Site
Helpline: 1‑267‑338‑4262 | info@genetic.org
AXYS - The Association for X&Y Chromosome Variations
Helpline: 1‑267‑338‑4262 | info@genetic.org

Search results for: ⡅🏒 www.Pharmacity.shop 🏒⡅ cheap Motilium tablets fast shipping online order cost Bactrim tablets online pharmacy

NEXXYS/New England 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

2024-02-28T13:42:40-05:00Categories: |

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

2024-02-28T13:39:32-05:00Categories: |

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

2024-02-16T14:58:49-05:00Categories: |

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

2024-02-16T14:59:28-05:00Categories: |

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

2024-02-16T14:49:45-05:00Categories: |

AXYS Chat Pop-ins

AXYS Chat Pop-in

NEW SCHEDULE

2nd Saturday of the Month | 4-6pm Eastern Time

Start time in other regions: 3pm Central | 2pm Mountain | 1pm Pacific

About these meetings

For security reasons, we ask that you please register in advance for each meeting. We apologize for this inconvenience.

AXYS Chat Pop-ins are meeting spaces for anyone 18 and up with any X and/or Y variation! We would like to stress that these meetings are intended ONLY for those with an X/Y variation.

Come hang out in an open, friendly environment. Chat with others or just check things out with no obligation to speak or be on camera. Celebrate your accomplishments and support others in their challenges.

Your privacy is very important to us. AXYS will not record any of these meetings and we ask that you please respect the privacy of other attendees. We also ask that you abide by the AXYS Activities Conduct Policy: https://genetic.org/axys-activities-conduct-policy/

This meeting is not intended to be therapy and should not be used as a substitute for the services of a mental health professional.

AXYS Chat Pop-in

2023-09-29T15:44:41-04:00Tags: |

AXYS 2023 Virtual Family Conference Agenda

For full conference session information, please visit the AXYS 2023 Virtual Family Conference registration page on the Zoom Events platform.

When visiting the above linked page, scroll down and you will see the tabs named “Sessions,” “Speakers,” and “Sponsors.” There you can search for sessions by keyword and/or filter them by date, X/Y variation, or target audience. Click/tap on a session for speaker information and a description. Please note that the agenda is still being updated and all agenda information is subject to change.

For those that have registered: from the conference lobby, go to the Sessions tab and bookmark sessions that interest you to build your own custom Agenda! You can do this by clicking the Zoom Events bookmark icon icon. Sessions that you bookmark will be added to the schedule that can be viewed by going to the Agenda tab. Click here for a video tutorial!

Agenda Overview

Times are in Eastern Daylight Time (U.S. and Canada)

Updated: 6/21/2023

Opening Celebration

XXY Welcome Open House Drop in Session

Hosts: Dalene Basden | David Fox | Matt McKeon | David Wright

XYY Welcome Open House Drop in Session

Host: Silvia Mann

Trisomy X Welcome Open House Drop in Session

Hosts: Hannah Acevedo | Carrie Curtis

XXYY Welcome Open House Drop in Session

Hosts: Gail Decker | John Sloss

XXXY and others Welcome Open House Drop in Session

Host: Jenn Chapdelaine

Mosaic Welcome Open House Drop in Session

Host: Stefan Schwarz

Bienvenidos Hispanohablantes

Hosts: Hannah Acevedo | Silvia Mann

Mid Atlantic (PA, NJ, DE, MD, DC, VA, WV) Welcome Session

Hosts: Matt McKeon | Stefan Schwarz

New England Welcome Session

Hosts: Dalene Basden | Jenn Chapdelaine | Andrea Millett

NY Tri State and Upstate NY Welcome Session

Host: Carrie Riby

Southeastern (GA, FL, AL, MS, TN) US Welcome Session

Hosts: Dorothy Boothe | Sharron Close

Midwest Welcome Session

Host: Carol Meerschaert

Rocky Mountain Welcome Session

Host: Rob Lee

West Coast Welcome Session

Host: Hannah Acevedo

Introduction to X&Y Variations

Speaker: Susan Howell, MS, MBA, CGC

Additional video resources: learn the basics of XXY, XYY, Trisomy X, XXYY, XXXY, and Mosaicism

Updates from the eXtraordinarY Babies Study – 290 infants with a prenatal diagnosis of sex chromosome trisomy (XXY, Trisomy X, XYY) and XXYY

Speakers: Nicole Tartaglia, MD, MS | Shanlee Davis, MD, PhD | Jennifer Janusz, PsyD | Susan Howell, MS, MBA, CGC

Anxiety in Children and Adolescents with X&Y Chromosome Variations – Symptoms from early childhood to adolescence and considerations for treatments

Speakers: Rebecca Wilson, PsyD | Megan Louderman, PhD | Caitlin Middleton, PsyD

Adult Curiosities & Consequences: Culpability and Defense Dilemmas for Individuals with X & Y Chromosome Variations

Speaker: Sharron Close, PhD

Exactly what do you mean by “developmental delay?” – Developing Developmental Milestone Charts for XXY, XYY, Trisomy X, and XXYY

Speakers: Nicole Tartaglia, MD, MS | Talia Thompson, PhD

Research Partnership: The GALAXY Registry

Speakers: Shanlee Davis, MD, PhD | Alexa Carl, MPH

Get Moving! Strategies for Stimulating Motor Skills and Physical Activity in Children with X&Y Chromosome Variations

Speakers: Shanlee Davis, MD, PhD | Syd Martin, MS, OTR

Let’s Chat: What you wish you knew earlier – A discussion for adults with X or Y variations

Speakers: Anjuli Hurt | Matt McKeon | Stefan Schwarz | David Wright

GALAXY Registry Office Hours

Hosts: Alexa Carl, MPH | Natalia Klamut, Research Coordinator

First Time Attendee Check-in Session

Gender Identity in Klinefelter Syndrome

Speaker: Tet Yap

Gender identity, gender questioning and gender dysphoria: Qualitative evidence to inform proposals for improved care for Klinefelter syndrome/XXY

Speakers: James Elander | Claire Harkin

Ask the doctor: Testosterone

Host: Alan Rogol, MD, PhD

Sibling chat

Host: Carol Meerschaert

Beyond Hormones: Other medical conditions and physical symptoms associated with X&Y variations

Speakers: Nicole Tartaglia, MD, MS | Shanlee Davis, MD, PhD

First Giggles to First Words

Speakers: Michele Chadrom-Martinez, MA, CCC-SLP

Let’s chat about IEPs and 504 plans

Speaker: Talia Thompson, PhD

GALAXY Registry Office Hours

Hosts: Alexa Carl, MPH | Natalia Klamut, Research Coordinator

Finding Self Acceptance

Speakers: Hannah Acevedo, MS, LEP, ABSNP, BCBA | Matt McKeon, MS, CCC-SLP

Temperament in Infants with X&Y Chromosome Trisomies: What we have learned from the eXtraordinarY Babies Study

Speaker: Megan Louderman, PhD

Social and emotional function in boys and teens with Klinefelter syndrome

Speaker: Allan Reiss, MD | Lara Foland-Ross, PhD | Andrea Joan Funtila, BS

Adults with Trisomy X Panel

Moderator: Hannah Acevedo, MS, LEP, ABSNP, BCBA | Panel: Katy Boulet | Anjuli Hurt | Andrea Millett | Kayla Zuis

Brain structure and function in boys and teens with Klinefelter syndrome

Speaker: Allan Reiss, MD | Lara Foland-Ross, PhD

Trisomy X: A Review and Care Update for Families and Health Care Providers

Speaker: Kristen Wigby, MD

Let’s chat about Confabulation: When your child does not seem to tell the truth

Host: Gail Decker

Scavenger Hunt

Host: Andrea Millett

Adults with XXY: Create a timeline of significant moments

Host: David Wright

First Time Attendee Check-in Session

Government Benefits

Speaker: Ginnie Cover, MSW

How we did it: Lessons from XXYY parents on how to get traction with clinicians and researchers for rare X and Y variations

Speakers: Gail Decker | John Sloss | Nicole Tartaglia, MD

State of Fertility in X and Y Chromosomes Variations Individuals What You Should Know in 2023

Speaker: Hooman Sadri, MD, PhD

GALAXY Registry Office Hours

Hosts: Alexa Carl, MPH | Natalia Klamut, Research Coordinator

Supplemental Needs: A Novel About X/Y Variations

Speaker: Ginnie Cover, MSW

KYZATREX™, a new oral testosterone medicine

Speaker: Amit Patel, MD | Medical Director, Marius Pharmaceuticals

Let’s Chat: Trisomy X Support App and Book for Teens

Host: Tanja Schulz-Hess

Why I Hired a Workforce Nobody Else Would

Speaker: Randy Lewis

Profiles of XXY Entrepreneurs + Powerful Lessons Learned Along the Way

Host: David Fox

Dr. T’s 5 Main Areas to Consider When Deciding Whether to Start Treatments for Behavioral Concerns in X&Y Variations

Speaker: Nicole Tartaglia, MD, MS

Let’s talk about getting older

Host: TBD

Fireside Chat

Speakers: Carol Meerschaert | Erin Torres DNP, MSN, CRNP-PMH | AXYS Board of Directors

GALAXY Registry Office Hours

Hosts: Alexa Carl, MPH | Natalia Klamut, Research Coordinator

First Time Attendee Check-in Session

NIH Trisomy X Study: Jonathan and Erin will share info on the study and answer your questions

Hosts: Jonathan Blumenthal, MA |  Erin Torres, DNP, MSN, CRNP-PMH

Treatments for Learning Disabilities in X&Y Chromosome Variations: What does research show really works?

Speaker: Jennifer Janusz, PsyD

KYZATREX™, a new oral testosterone medicine | Marius Pharmaceuticals Office Hours

Host: Amit Patel, MD | Medical Director, Marius Pharmaceuticals

Diabetes and X&Y Variations

Speaker: Andrea Mucci, MD

XXYY Focus Group

Hosts: Nicole Tartaglia, MD, MS | Talia Thompson, PhD | Joanna Dreyer, PhD

Apraxia in X&Y Chromosome Variations

Speaker: Jacqueline Frazier, MA, CCC-SLP

Gender and Sexual Orientation in Youth and Adults

Speaker: John Strang, PsyD

Top 5 Parent Concerns about Executive Functioning from the eXtraordinarY Kids Clinic: Practical Tips and Ideas to Help

Speakers: Jennifer Janusz, PsyD | Ashley Nguyen-Martinez, PsyD

X&Y Variations Gathering

Hosts: Hannah Acevedo | Carrie Curtis | Silvia Mann | Andrea Millett

XXYY Gathering

Hosts: Gail Decker | John Sloss

GALAXY Registry Office Hours

Hosts: Alexa Carl, MPH | Natalia Klamut, Research Coordinator

First Time Attendee Check-in Session

Meditation

Host: Dan Globus

X- vs. Y- Chromosome Influences on Human Behavior: A Comparison of Psychopathology in XXY and XYY

Speaker: Srishti Rau, PhD

Autism and X&Y Variations – How do they overlap?

Speakers: Nicole Tartaglia, MD, MS | Rebecca Wilson, PsyD | Caitlin Middleton, PsyD

Understanding the Phenotypic Spectrum and Family Experiences of XYY: Important Considerations for Genetic Counseling

Speakers: Rachel H. Gore, ScM, CGC | Colleen Jodarski, MGC, CGC

Related Viewing:
Michael Setzer, ScM, CGC – Whole Genome Sequencing and Genetic Counseling for X&Y Variations at NIH from the AXYS 2021 Virtual Family Conference

Adults with Trisomy X

Host: Andrea Millett

Adults with XXY

Host: Matt McKeon

Black Affinity Group

Hosts: Dalene Basden | Erin Torres

2SLGTBQIA+ Affinity Group

Hosts: Michael Palumbo | David Wright

XXYY Open House

Host: Gail Decker

Fireside Chat/Sendoff

Speakers: Carol Meerschaert et al

2023-06-25T10:29:58-04:00

Deep phenotypic analysis of psychiatric features in genetically defined cohorts: application to XYY syndrome

Article Title: Deep phenotypic analysis of psychiatric features in genetically defined cohorts: application to XYY syndrome

Authors: Raznahan, Rau, Schaffer, Liu, Fish, Mankiw, Xenophontos, Clasen, Joseph, Thurm, Blumenthal, Bassett, and Torres

Date of Publication: February 20, 2023

“Across the full XYY group, we find a complex correlation between psychopathology and functioning such that the most severely impacted symptom domains are not necessarily those most predictive of adaptive functioning or caregiver strain. Finally, network modelling suggests 8 main axes of psychopathology in XYY syndrome, with core roles for overall symptom scores, inattention, and social difficulties.”

Read more

Associations of psychiatric disorders with sex chromosome aneuploidies in the Danish iPSYCH2015 dataset: a case-cohort study

Article Title: Associations of psychiatric disorders with sex chromosome aneuploidies in the Danish iPSYCH2015 dataset: a case-cohort study

Authors: Sánchez, Montalbano, Vaez, Krebs, Byberg-Grauholm, Mortensen, Børglum, Hougaard, Nordentoft, Geschwind, Buil, Schork, Thompson, Raznahan, Helenius, Werge, and Ingason

Date of Publication: February 2023

“Increased risks of psychiatric disorders associated with sex chromosome aneuploidies, combined with low rates of clinical diagnosis of sex chromosome aneuploidies, compromise the adequate provision of necessary health care and counselling to affected individuals and their families, which might be helped by increased application of genetic testing in clinical settings.”

Read more

Variegation of autism related traits across seven neurogenetic disorders

Article Title: Variegation of autism related traits across seven neurogenetic disorders

Authors: Lee, Niu, Zhang, Clasen, Kozel, Smith, Wallace, and Raznahan

Date of Publication: April 7, 2022

“Gene dosage disorders (GDDs) constitute a major class of genetic risks for psychopathology, but there is considerable debate regarding the extent to which different GDDs induce different psychopathology profiles. The current research speaks to this debate by compiling and analyzing dimensional measures of several autism-related traits (ARTs) across seven diverse GDDs.”

Read more

Go to Top