AXYS has a number of affiliated support 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 and 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 are affiliated with AXYS Clinic and Research Consortium hospitals, and they meet in those facilities. Other groups meet in libraries, medical centers, or churches.
National & International Support Groups Serving All X and 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 IE’s and Regional Center advocacy, provide support groups for all ages, hold an annual picnic, and support research through fundraising activities.
Contact: Lorena Quiroga, 818-640-5393, firstname.lastname@example.org
(DE, Washington, DC, MD, NJ, NY, PA, VA & WV)
Contact: Sandy Schindler
Support Group Meeting
The Mid Atlantic Region (DE, Washington DC, MD, NJ, NY, PA, VA & WV) Support Group Meeting is scheduled for Sunday, October 14, 2018 from 1pm to 4pm.
This support group meeting is for ALL X & Y chromosome variations. Adults with variations as well as kids and parents are encouraged to attend. By request from those who attended our Summer Social, this meeting will allow more time for open discussion and social interactions for all.
This meeting will be held at Nemours Alfred I. duPont Hospital for Children located at 1600 Rockland Road, Wilmington, DE 19803.
LOCATE THE MEETING ROOM
- You should park in the visitor garage at the hospital entrance and take the elevators up to the atrium
- The meeting will be held in Classroom 1
- Once in the atrium, take the atrium elevators up to the third floor
- When exiting the elevator, turn right and then right again
- This will take you to the connector between the buildings
- Continue straight down that corridor, past the Family Resource Center and continue until you see overhead sign for the Child Life Activity Center (C on the 3rd floor map)
- Turn right at that corridor and Classroom 1 will be on your left
- Directional signs will be posted along the way to help guide you
Dr. Judith Ross, pediatric endocrinologist, researcher and Director of the eXtraordinarY Kids Clinic at Nemours will provide an update on the clinic, current research and will be answering all of your questions in a Q & A session.
A relaxed and informal breakout session will be provided for those with conditions.
Light refreshments will be provided.
We look forward to seeing you! Please RSVP
Sandy and Kevin Schindler
New York Area Support Group for X and Y Chromosome Variations
(XXY, XYY, XXX, XXYY, XXXXY, XXXX, XXXY, XXXXX)
Support Group Meeting:
SAVE THE DATE!
Our next support group meeting will be on July 1st, 1-3 p.m. at the gazebo in Washington Market Park (www.washingtonmarketpark.org/gazebo). The gazebo provides a lovely gathering place for us to get to know each other better, share experiences and learn from each other. While the reservation for the gazebo limits us to 2 hours, those who wish to linger can simply move to tables at the side of the park or hang out on the grass. There are also many nearby places for food and refreshments.
To pay for the suggested donation for the use of the gazebo, we hope a suggested donation of $5 per person and $10 per family would be manageable. If not, please let me or Virginia Cover know.
The park is in Manhattan at the corner of Chambers and Greenwich Streets. It is easily accessible by train and car. More details will be provided as we get closer to the date.
Hope to see you in July!
Contact: Anita Chambers, email@example.com
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!
You are welcome to contact me personally with any questions you may have firstname.lastname@example.org or 402-681-5455.
X & Y Chromosome Variation Support Group Serving Oregon and Washington State
Our monthly meeting is from 5 – 6:30 p.m. at the Salem Hospital campus in Salem OR . (Every third Saturday of the month).
From I-5 : Take the OR-22/OR-99E-BR exit, EXIT 253, toward Detroit Lake/Bend.
Continue about 2 miles heading west. Cross 12th st (right after going over an “overpass”) and turn right into the hospital campus at the EMERGENCY sign. It is right at a point where the right lane merges into the left lane so stay in the rt lane and just turn right at the EMERGENCY sign. Then go a short distance and park in either the parking garage or in the emergency parking lot area. then walk a few yards north to Bldg. D it may say Family Birth Center or something on it. Once inside, there will be signs.
See you there!
Contact: Carol Campbell
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.
Support Group Meeting:
When: Sunday October 21st, 1-4 PM
Where: Nell Hodgson Woodruff School of Nursing, Emory University, 1520 Clifton Road NE, Room 276, Atlanta, GA 30322
Program at 1:30 PM: Mr. Matthew Salmon, Georgia Vocational Rehabilitation Agency (GVRA)
This meeting is offered as a gathering place for family members of and individuals affected by Chromosome 23 (X&Y) Variations. Our program for this date will be presented by Mr. Salmon who will tell us about the GVRA, what it does and how it may be used as a resource for our group.
We are looking forward to having you join us! Weather permitting, we would like to have a pot-luck picnic on the lawn outside of the school of nursing. Please bring an item of food and/or drink to share. Please also bring picnic blankets since we will be sitting on the lawn. If weather does not cooperate, we will do it indoors in Room 276. Our social time and picnic will follow the program.
We regret that there are no options for child care.
Hosted by: Dorothy Boothe, Sharron Close, Amy Blumling
Please RSVP by October 14th , 2018 by contacting Amy Blumling: email@example.com
For information about directions and free parking, please see the event flyer.
Meets twice per year.
Support Group Meeting:
Saturday, September 22, 2018
1565 Jefferson Road
Rochester, NY 14623
We will be cooking up Hamburgers and Hots. Feel free to bring a dish to pass.
RSVP by 9/15: Carrie Riby at 585-256-1638 or firstname.lastname@example.org
Support Group Meeting
I am pleased to announce that we will be holding the first AXYS Twin Cities Support group meeting on Saturday, November 10th from 1pm to 3pm. This is for ALL X and Y chromosome variations. Adults with variations, as well as parents, are encouraged to attend! We hope to see many young adults, adults, and parents coming together to connect at this meeting!!!
This meeting will be held at Chanhassen Library in the Longfellow Room.
7711 Kerber Blvd, Chanhassen, MN 55317
Water, coffee, and cookies will be provided. Unfortunately, we are unable to provide child care for young children during the meeting.
Support Group Meeting
Sunday, September 30, 2018
12PM – 3PM
615 Cuesta Drive
Mountain View, CA
Look for yellow balloons marking our picnic spot
RSVP and Questions to:
A support group for individuals with X & Y Chromosome Variations and their family members.
To join the AXYS Chicagoland Support Group on Facebook, please email your request to ConnectionsXY@gmail.com. For the privacy and security of group members, this Facebook group is invite only.
Support Group News
AXYS Chicagoland Connections, a Support Group for X & Y variations, is underway!
AXYS Chicagoland Connections had its first face-to-face meeting on Saturday, June 16, 2018 in Chicago. Twenty-five individuals were able to attend this meeting. Medical Director of the Rush University Medical Center Multidisciplinary X and Y variations Clinic Elizabeth Berry-Kravis, MD, PhD attended and provided an overview of the clinic. Angel Wang, the Clinic Director was also there. It was a great opportunity for open discussion and collaboration for meeting the needs of individuals with X & Y variations in the Chicagoland area.
The goal for in person support group meetings is to have at least one educational facet at each meeting in addition to networking and socialization time. Future support group meeting topics will include discussions on Early Intervention, Special Education, Transition, Person Centered Planning, Social Security / Medicare Benefits, Employment, Medical, etc. The group is also collecting local resources to share with individuals and family members of individuals with X & Y variations and the Rush University Medical Center Multidisciplinary X and Y variations Clinic that individuals.
In addition to face-to-face meetings, a private group Facebook Page has been started. If you would like to join this group, please send a request to Kerry at ConnectionsXY@gmail.com and you will be added to the group.
Thank you again to Dr. Berry-Kravis and Rush Medical Center for providing meeting space for the first support group meeting and thank you to AXYS for their assistance in reaching our target audience and for their tireless efforts for the X & Y Chromosome Variation community.
If you have any questions about AXYS Chicagoland Connections, please email them to ConnectionsXY@gmail.com.
An AXYS Chicagoland Support Group for individuals and/or family members
of individuals with X & Y Chromosome Variations is having its second meeting!
AXYS Chicagoland Connections Support Group Meeting Details:
Saturday, September 8, 2018
9:00 am – 12:00 noon (CDT)
Rush University Medical Center, Armour Academic Center (AAC)
600 S. Paulina St, Chicago, IL 60612
Room 539 (on the 5th floor)
Click here for Information on Directions, Parking Information and Public Transportation to Rush University Medical Center
(these directions bring you to the Rush Medical Campus, please proceed to the Armour Academic Center)
There is construction around the building. Please follow signs to enter the parking garage.
Carla Z. Minutti, M.D., Chief, Section of Pediatric Endocrinology at Rush University Medical Center is scheduled to attend. She is part of the Multidisciplinary X and Y Variations Clinic.
Additional topics for this meeting: Resources, IEPs, and Early Intervention and future meeting planning.
RSVP to: ConnectionsXY@gmail.com
If you would like to bring snacks or refreshments to share with the group it would be appreciated.
Childcare will not be available at this meeting. This is something we hope to have available at future meetings. If you plan to bring your children, please know they are welcome. We ask that you bring ‘quiet’ entertainment for them.
Looking forward to meeting you!
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 Eastern Nebraska.
Contact and general information:
- Support Group Name: Australian X & Y Spectrum Support
- Service Area: Australia
- Website: axys.org.au
- Email: email@example.com
- 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.
For more information please email firstname.lastname@example.org.
The group currently serves 6 other families in Greece (with XO, XXX, XXY children & 48XXY adult young man).
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.
Service Area: All of Greece
Mailing Address: Syros, Kalamos Galissa
City: (Island) Syros
Zip/Postal Code: 84100
Leader Name(s): Irene Simeonidou
Leader Email Address(es): email@example.com & firstname.lastname@example.org
Phone: +30 6977660860 & +30 2281062198
Website: (Facebook page) facebook.com/groups/dikaioma.kyklades/
Condition(s) Served: ( All)
AXYS Support Group for XXY
NEXXYS: Serving MA, VT, NH, ME, CT, RI, Upstate NY
Support Group Meeting:
NEXXYS (New England XXY Support) will meet on Saturday, October 13, from 10 am to 2 pm, in the Board Room of St. Joseph’s Hospital, 172 Kinsley Street, Nashua, NH.
We are a group of families who are affected by Klinefelter Syndrome. Some of us are XXY, others have sons who are 47,XXY.
Our support group was founded in Central Texas but our members are all over the map. We meet on a regular basis, either in person or via conference calls. Please click Contact Us or call us to be added to our group.
Our goal is to learn from each other and educate our physicians, schools and others who might not fully understand the needs and obstacles a KS guy might encounter.
We are informal and have been there for many who suddenly find out that they are affected by Klinefelter Syndrome.
We hold conference calls on the 12th of each month to share our experiences living with XXY/KS. Please contact us for an invite.
Sabrina (mom): 512-818-3739
Karsten (dad): 512-576-3471
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.
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).
All new members must provide verifiable identification before being admitted to this Facebook group.
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
Support Group News
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)
Trisomy X support group
Location: Toronto, Canada
If you are a member of the AXYS Trisomy X/Triple X/XXX Global Support Group, send a personal message to Pamela Andrews or email Michelle Buckley at email@example.com for additional information.
The group is being organized by two parents with 5 & 6 year old daughters.
This is an informal group. Please bring your daughters with you. All children welcome.
If you would like to request to join the group or simply talk, please message the administrator. If you would like to expedite your acceptance into the group, please fill out the online survey here: goo.gl/forms/4EHFdA0Qoh
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.
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!
Contact: Carol Vigo, firstname.lastname@example.org
Sydney XXYY Event
Date: Saturday, 21st October 2018
Time: 10 AM
Where: Blaxland Riverside Park, Sydney Olympic Park NSW
This group was developed for people who are associated with the rare variant of Klinefelter Syndrome, 48 XXXY Syndrome (aka 483xy). We would love to hear anything you have to share about this rare diagnosis!
How to Start an AXYS-affiliated Support Group
Don’t see a support group near your home?
Support groups are started by committed volunteers. See below for tips on starting a support group in your area. AXYS is happy to assist local support groups in publicizing meetings on our website, in email blast messages, and in periodic newsletters. If you are interested in organizing a support group meeting, 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 can 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, and limited funding (FY 2027-18) for honoraria or fees for audiovisual support
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 mix of meetings with speakers and group discussion, and social events such as picnics or meetings at restaurants works 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.