Support Groups2018-12-11T20:14:28+00:00

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.

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National Support Groups Serving All X & Y Variations

Chicagoland Connections

A support group for individuals with X & Y Chromosome Variations and their family members.

Contact: ConnectionsXY@gmail.com

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.

Contact: Tina Hanif, Thanif0705@ymail.com

AXYS Florida Support Group on Facebook

Support Group Meeting:

Saturday, December 1st, 2018

Lettuce Lake Park, Tampa, Florida

RSVP or questions to Thanif0705@ymail.com, or on our Facebook page, AXYS Florida Support Group.

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, lorena.quiroga3@gmail.com

AXYS Midwest Support Group (KS, MO, NE, IA and other Mid-Western states)

Midwest Support Group on Facebook

KS Mom Blog

For more information, contact: Kaley Hull, kaleymcmanamon84@gmail.com913-568-8441

New York Area Support Group for X and Y Chromosome Variations
(XXY, XYY, XXX, XXYY, XXXXY, XXXX, XXXY, XXXXX)

Contact: Anita Chambers, akychambers@gmail.com

NY Tristate KS/SCA Support Group on Facebook

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 garyglissman@hotmail.com or 402-681-5455.

X & Y Chromosome Variation Support Group Serving Oregon and Washington State

Hello all,

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, xxyKSAlemOR@yahoo.com, 503-871-2767

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.

AXYS Rocky Mountain Support Group on Facebook

Contact: Hannah Acevedo, sfbayareaxyhelp@gmail.com415-816-5577

San Francisco Bay Area Support Group on Facebook

Support Group Meeting

Sunday, January 27, 2019, 1:00 – 3:00 pm

Stanford Hospital

300 Pasteur Drive, Stanford, CA

Linda Meier Boardroom H3210

Presentations by: Dr. Allan Reiss, Psychiatry and Behavioral Sciences, and Dr. Tandy Aye, Pediatric Endocrinologist

Questions and RSVP to  sfbayareaxyhelp@gmail.com

More details will be announced soon.

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.

Contact:  Dorothy Boothe, theboothefamily@yahoo.com

International Support Groups Serving All X & Y Variations

Contact and general information:

  • Support Group Name: Australian X & Y Spectrum Support
  • Service Area: Australia
  • Website: axys.org.au
  • Email: contact@axys.org.au
  • 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.

For more information please email contact@axys.org.au.

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.

Service Area: All of Greece
Mailing Address: Syros, Kalamos Galissa
City: (Island) Syros
ST/Province: Cycladhes
Zip/Postal Code: 84100
Country: Greece
Leader Name(s): Irene Simeonidou
Leader Email Addresses: iren_simeonidou@yahoo.gr & dikaioma.kyklades@gmail.com
Phone: +30 6977660860 & +30 2281062198
Facebook group: facebook.com/groups/dikaioma.kyklades/
Conditions Served: All

Condition-specific groups

47,XXY

Klinefelter/XXY Support Rocky Mountain Region Facebook 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. 

AXYS XXY Klinefelter Global Support Group on Facebook

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).

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
or
Karsten (dad): 512-576-3471
klinefelters.org/index.htm

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.

AXYS Support Group for XXY
NEXXYS: Serving MA, VT, NH, ME, CT, RI, Upstate NY

NEXXYS Facebook Group

Contact: Martha Pepek, martha.pepek@gmail.com or Bill Mulkern, hume_rules@msn.com

 

47,XYY

XYY Global Support Group on Facebook

All new members must provide verifiable identification before being admitted to this Facebook group.

47,XXX

The 4th Massachusetts Area States Trisomy X Support Group meeting.

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

November 12, 2018

Dear Families,

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- 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.

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 m.buckley40@hotmail.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.

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. If you would like to expedite your acceptance into the group, please fill out the online survey here: goo.gl/forms/4EHFdA0Qoh

48,XXYY

XXYY Parents and Caregivers Facebook Group

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!

Other Variations

48,XXXY Medical Syndrome Facebook Group

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 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 info@genetic.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 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.