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
(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
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 | 3rd Friday of the Month | 5-7pm Mountain Time | 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.
Contacts: Dorothy Boothe, theboothefamily@yahoo.com | Shannon Efteland, Shannon.efteland@gmail.com
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:
TBA
Meets quarterly or semiannually via Zoom depending on community needs.
Next Support Group Meeting:
TBA
Contact: Jackie Gubbioli | Email: 47xxx@gmail.com | Tel number: +34629647334
24/7 WhatsApp group in Spanish
Contact Jackie for more information / Contacte con Jackie para obtener más información
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.
48,XXYY
48,XXXY
Join the AXYS Discord Server
Join our private Discord community to connect with other members of the X&Y chromosome variation community. To request access, please email info@genetic.org and include the phrase “AXYS Discord Server Access” in the subject line.
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.