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
Jacob Flores, Educational Workshops and Outreach
Contact: Sandy Schindler
Support Group Meeting
October 22, 2017 1:00 – 4:00pm
Guest Speakers are Dr. Nicole Tartaglia & Dr. Judith Ross
Nemours Alfred I. duPont Hospital for Children located at 1600 Rockland Road, Wilmington, DE 19803
Contact Sandy Schindler 302-893-3093 for more information
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 the 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 I am the contact person
(XXY, XYY, XXX, XXYY, XXXXY, XXXX, XXXY, XXXXX)
Support Group Meeting:
There will be a NY Tristate Support Group meeting November 5, 2017, starting at 2:30. The meeting will be hosted by Avrin Slatkin and his wife Nina at 46 Harrison Avenue, Montclair NJ 07042. The focus of the meeting will be children with X and Y chromosome variants. An adult-only meet and greet in Manhattan is being planned for late October or November. Contact Anita Chambers at firstname.lastname@example.org for directions and additional details of both meetings. Please also join the NY Tristate KS/SCA Support Group on Facebook (https://www.facebook.com/
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 email@example.com or 402-681-5455.
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
For more information, contact Kaley Hull
Support Group Meeting
Saturday, September 16 from 2-4 p.m. in Room 276 at Emory University’s Nell Hodgson Woodruff School of Nursing, 1520 Clifton Road, Atlanta, GA 30322. The speakers, attorneys Heather Nadler and Mark Biernath of Nader Biernath, LLC, will share from their expertise in estate and special needs planning. Contact firstname.lastname@example.org or 706-224-4437 for more information.
For NC: Lars Johnson- email@example.com Ph: 828-243-0534
For SC: Tom Clephane- TC50@yahoo.com Ph: 864-270-8140
For GA & rest of Southeast: Dorothy Boothe- firstname.lastname@example.org Ph: 706-224-4437
For more information, go to our Facebook page at the AXYS Southeastern
Support Group at:
Macy’s parade: Contact Carrie about her plans to walk in the Macy’s day parade and to raise funds for the AXYS mission!
Contact: Carrie Riby: email@example.com or at 585-256-1638
Support Group Meeting
Upstate New York Support Group Meeting, Rochester, NY
September 16: 11am – 2pm,
This is an informal gathering for folks to get to meet each other. Includes beverages and a light lunch.
Location: 1565 Jefferson Road, Building 200 Suite 280, Rochester, NY 14623
RSVP Carrie Riby: firstname.lastname@example.org
For more information, contact Julie Urban:
Sunday, November 5, Noon – 2:00 pm
Look for balloons marking our picnic spot
If it’s raining, we are working on an indoor option. Please RSVP so we are sure to keep you updated of any changes.
RSVP and questions to:
- Support Group Name: Australian X & Y Spectrum Support
- Service Area: Australia
- Website: http://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
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): firstname.lastname@example.org & email@example.com
Phone: +30 6977660860 & +30 2281062198
Website: (Facebook page) https://www.facebook.com/groups/dikaioma.kyklades/
Condition(s) Served: ( All)
NEXXYS: Serving MA, VT, NH, ME, CT, RI, Upstate NY
Support Group Meeting
NEXXYS (the New England XXY Support Group) will meet on Saturday, November 4, from 1 to 4 PM, at the Thayer Public Library, 798 Washington Street, Braintree, Massachusetts. We will be in the large conference room upstairs. In addition to our usual support group, the co-chairs – Laura Brady and Bill Mulkern – will report on the progress being made toward the KS Clinic at Massachusetts General Hospital. To RSVP or with any questions, contact Bill Mulkern at firstname.lastname@example.org.
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
We also operate the Facebook group: KS Global Support Group
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.
“Taking it to the MaXXX”
What a wonderful time we had sharing each other’s stories, reconnecting and meeting new families! Here is a recap of events that occurred:
- Nineteen families expressed interest in coming
- Eleven families attended our meeting, traveling from all over MA, NH, and NY
- Seven girls with Trisomy X ranging from 8 years old to 28 years old
- Three girls with Trisomy X had never met another girl with the condition!
- Sharron Close, a pediatric nurse practitioner and scientist at Emory University, and her students, Cathy and Janette, have a special clinical and research interest in X & Y variations. They were able to call in to the meeting and help answer questions and gather ideas from families regarding future research areas.
The highlight of the meeting was seeing the girls with Trisomy X meet their peers for the first time. It was very heartwarming to see. It is this very reason I enjoy so much bringing these amazing girls and their families together.
I want to thank all the families who brought food items to share. A huge thank-you to Andrea Wilczynski for her hard work developing and maintaining the Facebook site for our girls with Trisomy X. I’m so glad Andrea won the free raffle which was Virginia Isaacs (Ginnie) Cover’s book Living with Klinefelter Syndrome, Trisomy X and 47,XYY. Special thanks to Andrea W, Brian, Eileen Curran, Jim Zuis and Kayla, who supplied crafts and kids games. Many thanks to Kim Smith-Daly and Erin Frith for maintaining the Facebook site for Trisomy X and all members involved in AXYS for all the support and education they provide our families.
A very special thank-you to my daughter Jessica Burke for reaching out to all the new girls/ladies with Trisomy X in our support group. Jessica, you are truly amazing!
Thank you all for sharing your stories and coming together to help support and increase awareness of Trisomy X. We are looking forward to our next meeting. I am truly grateful to have the opportunity to bring all these amazing girls and families together!
Joanne (and Greg) Burke and our daughter, Jessica Burke (17 years old, Trisomy X), siblings Michael, Christine and Jamie Burke
2016 Awareness Proclamation signed by Massachusetts Governor Charlie Baker :
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.
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!
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 firstname.lastname@example.org.
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.