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 Support Groups
Jacob Flores, Educational Workshops and Outreach
November 5, 2016
“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 :
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
NEXXYS: Serving MA, VT, NH, ME, CT, RI, Upstate NY
May 13 event postponed to a later date.
(XXY, XYY, XXX, XXYY, XXXXY, XXXX, XXXY, XXXXX)
New York TriState KS/SCA Support Group— Visit the group’s Facebook page, https://www.facebook.com/groups/1750538338524920/?ref=bookmarks.
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.
Organizer: Kimberley Smith Daly and Erin Frith.
This group conducts regular Skype chat support group meetings.
Join the Facebook group AXYS Trisomy X/Triple X/ XXX Group:
This is a private group, so visit the public portal site and request to join.
To join the group, please < a href=”https://www.facebook.com/groups/AXYS.XXY/”>click here to sign up.
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
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
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 email@example.com or 706-224-4437 for more information.
For NC: Lars Johnson- firstname.lastname@example.org Ph: 828-243-0534
For SC: Tom Clephane- TC50@yahoo.com Ph: 864-270-8140
For GA & rest of Southeast: Dorothy Boothe- email@example.com 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: firstname.lastname@example.org 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: email@example.com
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:
International Support Groups
Contact and general information:
- Support Group Name: Australian X & Y Spectrum Support
- Service Area: Australia
- Website: http://axys.org.au
- Email: firstname.lastname@example.org
- 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
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.
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)
Online Support Groups
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.
How to Start and Access Support Groups
The following describes local support groups and local AXYS chapters.
The primary difference between these two forms of local support is the degree of affiliation between the local group and AXYS’s national organization.
“Local support groups” function independently of AXYS, and may offer a variety of support in the form of local or regional meetings and other services depending on local community needs and interests. Any local group may become listed on this site free of charge simply by submitting a completed registration questionnaire and upon verifying the identity of a least one local contact.
Local support groups are not affiliated with AXYS, and AXYS makes no representation concerning them other than that it will endeavor to update the listings shown on this site when and as new contact information is received from the local coordinator.
Some local support groups may wish to take further steps to become established as a “local AXYS chapter,” which entails becoming formally affiliated with AXYS. In addition to receiving the same free services as local support groups, local chapters have the option to receive on a cost-plus basis more significant levels of support from the national organization. In turn, the local groups agree to adhere to certain minimum standards of conduct and quality.
Benefits of Starting a Local Support Group
Reasons to consider forming a local support group:
- To create a network of people concerned about and working on the same issues.
- To bring together the collective wisdom of people who have already experienced the same challenges for which you are seeking solutions.
- To create a group that can make a difference in your community, maybe even save a life.
- 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 free of charge to your group via AXYS’s toll-free number and this website.
- Our information-packed publication for chapter and support group leaders.
- Online access to AXYS brochures and discounted prices on videotapes and other materials.
- Assistance in any mailing you decide to do to promote or serve your group.
How to Begin
The first step to beginning a local support group in your community is to contact the AXYS chapter relations department (see below) to express your interest. (Do the same if you already have an existing group and would like to list it on our website or request the above-described services.)
Within two weeks of receiving your completed form, you will receive a letter including tips in setting up your group, copies or links to current AXYS educational materials, as well as easy-to-follow guidelines concerning how to keep up to date and accurate the information AXYS provides concerning your group and events you are planning for your community.
Benefits to Becoming a Local AXYS Chapter
Whereas local support groups function independently of AXYS, some groups find it useful to take the next step and become a local AXYS chapter. Although not required, this step permits AXYS to provide additional assistance to the local group leaders.
In addition to all of the ways AXYS is able to support independent local groups, here are additional services in assisting a local AXYS chapter:
- AXYS letterhead, envelopes and business cards identify you and your local group as being associated with a national organization, adding immediate credibility and helping to open doors to offices that might otherwise question your credibility to speak with authority on behalf of the population.
- Your own email address with a genetic.org extension, and which automatically forwards any messages that you receive directly to your personal email account but without disclosing that address to anyone until you elect to do so on a case-by-case basis.
- Your own voice mailbox at AXYS’s toll-free number, where you can leave your own message for callers and that you can configure either to store messages until you dial in to receive them, or to automatically call you at a telephone number of your choice to let you know that you have a message waiting for you.
- A 3-page template on our website for you to describe your local chapter and the people who are associated with it, including an online collection feature for persons who are interested in donating money to your local group to make financial contributions to you.
- AXYS will permit your contributors to earmark their donations for your local chapter, and we will pass any donations along to you net of bank service fees and direct costs (less than 6 percent in total). This assures you at least 94 percent of such donations while saving you the time and hassle of needing to establish and maintain the 501(c)(3) tax-exempt status that provides your donors with a tax-exemption for their gifts.
- Access to AXYS’s confidential membership database in which to store contact information for all of the members of your local group, and including a number of helpful features such as the ability to send emails to everyone on your list or to generate mailing lists for letters and mailing labels.
- AXYS will act as your speakers bureau, using our national resources and contacts to help you locate top clinicians and research scientists who are willing to participate as guest speakers for your meetings or to conduct grand rounds with local health care professionals to help familiarize them with the condition and best practices.
The first step to beginning a local AXYS chapter in your community is to complete the interest Indicator Form and submit it to AXYS.
Within two weeks of submitting your form, you will receive an AXYS start-up kit. The kit includes guidelines and tips on starting your group, copies of current AXYS educational materials and instructions on next steps to formally affiliate your local support group as a local AXYS chapter.
How to Contact the AXYS Chapter Relations Department
Whether you elect to become a local AXYS chapter or prefer to remain an independent local support group, we at AXYS look forward to assisting with your efforts.
For additional information, contact AXYS’s administrative offices at the number listed below, or send an email message to the chapter relations coordinator.
Toll-free phone: 888-999-9428