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“Advances in the Interdisciplinary Care of Children with Klinefelter Syndrome”—This nearly 30-page story in the journal Advances in Pediatrics is directed at pediatricians and family physicians who treat children, and who may thus come across patients with Klinefelter syndrome. It alerts them to the risks the condition carries for neurodevelopmental and psychological complications, and suggests that diagnosis rates are likely to spike sharply upward given advances in genetics and prenatal neonatal screening. Click here.
“Expanding the Phenotype of Triple X Syndrome: A Comparison of Prenatal Versus Postnatal Diagnosis” —This cross-sectional study was published in the American Journal of Medical Genetics. It describes the diagnosis, physical aspects, medical problems, and neurodevelopmental features in a large cohort of females with 47, XXX. Click here.
“The Impact of Living with Klinefelter Syndrome: A Qualitative Exploration of Adolescents and Adults” — This research article examines the medical, psychological, and social challenges that arise in individuals with 47,XXY as well as providing practical recommendations for parents and professionals on how to meet these challenges. Click here.
See the link below for an archive of informative webinars featuring presentations by professionals in various fields relating to X and Y chromosome variations:
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.
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.
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
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
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.
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.
Condition(s) Served: (XXY, XYY, Trisomy X, Other, All) ALL
Meeting Schedule: Meetings will be announced as scheduled
Typical meeting Location: Sydney
The group also runs a “secret” Facebook support group: Australian X & Y Spectrum Support. This group is “secret” (a Facebook privacy setting) to protect members’ privacy.
Group mission:
To provide support and information to parents of individuals with sex chromosome variations including XXY, XYY and more
To provide support and information to individuals living with XXY (Klinefelter Syndrome), XYY and other sex chromosome variations
To provide awareness and information to education and health professionals and the wider community on sex chromosome variations; to advocate and lobby on behalf of our community
Support Group News:
Australian X & Y Spectrum Support (AXYS Australia) will have a conference on Saturday 10th November in Melbourne for all adults, parents, families, health professionals and educators linked to X & Y chromosome variants. There will be a variety of fantastic speakers.
The group currently serves 6 other families in Greece (individuals with XO, XXX, and XXY).
Group leader, Irene Simeonidou, provides info and translates documents for them.
Her comments:
We are planning to create a Greek organization (let’s call it support group) for families affected by X & Y chromosome disorders. But for now it’s just informal “meetings” through the Internet and friendly talking on the phone. We don’t have specific arranged meetings yet (we are working on it though).
I’ll create a Facebook page in Greek, and there will be a website, too. For the time being, there is only a Greek Facebook page for the rights of people with disabilities and special educational needs in Cycladhes, that I am running and checking every day, so I can also be reached there.
The AXYS XXY Klinefelter Global Support Group is managed by AXYS’s official Facebook group for XXY (to protect our members’ privacy, the group is members-only and requires members to sign up).
Klinefelter’s Syndrome (47XXY) Support Group for the Rocky Mountain Region, including UT, CO, WY, ID, & MT. Adults and parents with KS kids are encouraged to join.
A Facebook page and website developed by Ryan Bregante, an adult with Klinefelter Syndrome. His mission is to help foster a new community and spread positive awareness about Klinefelter Syndrome/XXY for the world to see.
Those interested in joining should contact AXYS by email: info@genetic.org
Our KS Sons Support Group:
The support group is for Parents of Young Adult 47,XXY Sons (18 and up). This virtual support group was started in September 2021 after one of the members attended the AXYS 2021 Virtual Family Conference and met other families with XXY sons around the same age. We noticed our sons were beginning to transition from their pediatric doctors to “adult” medical doctors due to their age.
We currently have about 8 families in the group from NY, Colorado and California. We have a Directory (which includes our name and cell number) for families that provide consent to share their information. We meet virtually via Zoom on the 1st Wednesday of each month at 6 pm Pacific Time (9pm Eastern Time). We welcome parents of young adults 47,XXY ages 18 and up.
The primary language of this group is Spanish. Spanish-speaking persons all over the world are welcome to participate.
The aim of the 47XYY Spain group is to support affected individuals, their families, caregivers, and close friends by sharing, learning, and helping them with information, meetings, remote events, and webinars, etc. in Spanish. Our North Star includes having medical advice, active participation in clinical studies and trials, and legal support to help members to have better access to healthcare and social security funds, in Spanish. Our vision is a society where XYY individuals are diagnosed early, fully integrated, (academically, socially and professionally) supported, and recognized.
Póngase en contacto con Silvia Mann en silvia.valencia@gmail.com para ser agregado a el grupo de WhatsApp. Es dedicado a brindar apoyo a padres de familia de niños con variación XYY.
Frequency of meetings: quarterly initially but would like to increase to monthly based upon group interest
This is a group for parents/guardians of children with X and Y chromosome variations as well as for individuals who themselves have an X or Y chromosome variation. This group is intended to provide support and guidance as well as to provide avenues for friendships within the X and Y chromosome community. Over time, I would like to be able to have speakers come to talk about areas of interest to the group as well as provide family events.
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)
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.
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.
We are a group of Parents & Caregivers of boys/men with 48XXYY Syndrome.
If you request to be a member, you MUST be a PARENT or PRIMARY caregiver to an XXYY boy or man to be approved. You will receive 3 questions when you request membership that must be answered before being approved. If you need help with translating to another language, please contact an administrator of this group. Thank you!
This group was developed for people who are associated with 48,XXXY Syndrome (aka 483xy). We would love to hear anything you have to share about this rare diagnosis!
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.
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
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.
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.