AXYS supports our community with in person and online groups. Support 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 churches.
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.
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.
To All Persons Interested in Klinefelter Syndrome or Other X and Y Chromosome Variation Conditions:
It is estimated there are more than 1,000 individuals in Nebraska who may have a genetic variation that includes an extra X or Y chromosome. Less than 25 percent of these individuals have been diagnosed accurately and even fewer are receiving appropriate health and educational support. As a result, many people and families face difficult challenges in finding information and services that could make a significant improvement in their lives. My wife and I have personal experience with this since our adult son was not correctly diagnosed until age 24 with 47,XXY (otherwise known as Klinefelter Syndrome). We spent many years and thousands of dollars trying to find out what was causing his learning, behavior and health issues and endured a lot of unnecessary pain and problems until we finally obtained this diagnosis and were able to initiate appropriate treatment
If you are an adult with an X and Y condition or a parent with a child who has this condition and would be interested in attending a support group meeting or to just learn more about the AXYS organization and resources available to assist you, please let me know. Inquiries from surrounding states are also welcome!
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.
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.
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.
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.
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
Thank you for joining us this fall for the 4th Massachusetts Area States Trisomy X Support Groupmeeting. 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)
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!
How to Start an AXYS Support Group
Don’t see a support group near your home?
Support groups are started by committed volunteers. If you are interested in organizing a support group, please send an email to email@example.com.
Reasons to consider forming a local support group:
To create a network of people concerned about X and Y variations
To bring together the collective wisdom of people who have experienced similar challenges
To create a group that can make a difference in your community
To offer the patient’s perspective to legislators, the local medical community and educators
Some of the ways that AXYS will assist your local group include
Referrals to your group via AXYS’s toll-free number and genetic.org
Publicity for meetings on the AXYS website, via blast e-mails, in our quarterly newsletter and on AXYS Facebook pages
Use of AXYS webinar software to hold virtual meetings or feature a remote speaker
Support groups can meet in homes, public meetings spaces at libraries or churches and synagogues, or in community rooms at hospitals. Many support 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 support group leaders are happy to mentor new leaders.
We look forward to hearing from you and having you join the AXYS effort to improve the well-being of individuals and families impacted by having an X or Y variation.