Discovery and Exploration | Process for discovery and exploration to create a successful outcome for employment.
Speaker: Tricia Zeltwanger, CESP | Career Counselor | Penn-Mar Human Services
Thursday, September 14 | 7PM Eastern | 6PM Central | 5PM Mountain | 4PM Pacific
Article Title: Quality of life in men with Klinefelter Syndrome – a multicentre study
Authors: Franik, Fleischer, Kortmann, Stikkelbroek, D’Hauwers, Bouvattier, Slowikowska-Hilczer, Grunenwald, Van de Grift, Cartault, Richter-Unruh, Reisch, Thyen, IntHout, and Claahsen-van der Grinten
Date of Publication: August 14, 2023
“Overall QOL in European men with KS is significantly worse compared to a healthy European reference population. Especially the presence of discrimination, less social activities and chronic health problems is associated with lower physical, psychological and social QOL. Further studies are necessary to investigate if a multidisciplinary approach may help to provide adequate counseling and psycho-social support to improve quality of life.”
Join us for an informal get-together in Mountain View. All members of the family are invited.
Date: Sunday, October 8th
Where: Register/RSVP or join the Facebook group for details
Agenda:
• Socialization activities, potluck
• Group introductions, announcements of research and upcoming events
• Socialization activities, potluck continues
What to bring:
• Food and drink for you and your family, or to share – whatever works for you. There should not be any pressure; we will have bagels, cream cheese, humus, water and some drinks if you do not have time to get anything.
• A chair or a blanket to sit on during our introduction circle.
• Games for your little ones.
Article Title: Association of Supernumerary Sex Chromosome Aneuploidies With Venous Thromboembolism
Authors: Berry, Finucane, Myers, Abril, Kirchner, Ledbetter, Martin, and Oetjens
Date of Publication: January 17, 2023
“Adults with supernumerary sex chromosome aneuploidies compared with 2 sex chromosomes had a small but statistically significant increased risk of VTE. Further research is needed to understand the clinical implications of this association.”
Article Title: Understanding the phenotypic spectrum and family experiences of XYY syndrome: Important considerations for genetic counseling
Authors: Jodarski, Duncan, Torres, Gore, Raznahan, and Similuk
Date of Publication: January 7, 2023
“XYY syndrome is a diagnosis that has significant implications on not only the affected individual, but the family as well. It is therefore imperative that HCPs fully understand the range of lived experiences with XYY so that we can better counsel and care for affected individuals and their families.”
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 
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!
Times are in Eastern Daylight Time (U.S. and Canada)
A special conference session for new community members | Sent 6/16/23
Register now for the AXYS 2023 Virtual Family Conference | Sent 6/7/23
AXYS 2023 Virtual Family Conference: create your own custom agenda! | Sent 5/23/23
2023 Conference: Early bird registration ends April 15 | Sent 4/6/23
2023 Conference: Early Bird Registration Now Open! | Sent 3/2/23
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.”
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.”
Article Title: What’s missing in sex chromosome aneuploidies? Representation and inclusion
Authors: Mehmet, McDonald, Saldarriaga, Pineros-Leano, and Dwyer
Date of Publication: January 2022
“Given that KS/TS happen by chance, theoretically, these rates should be similar across racial/ethnic groups. Namely, the rates of KS/TS should be similar among non-Hispanic Whites and Black, Indigenous, People of Color (BIPOC) communities. Currently, it is unknown to what extent HR-QoL has been examined in BIPOC communities affected by KS/TS. To provide culturally-informed care for all patients with KS/TS, it is critical to understand the experiences of BIPOC communities. We conducted a systematic review of the literature on HR-QoL in KS/TS to examine the extent that BIPOC communities have been included and represented in the literature to date.”
