support-groupAXYS 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 chromosome variations. These groups offer the opportunity to share experiences with others and to learn about resources that others have found valuable. Some of our groups are affiliated with AXYS Clinic and Research Consortium hospitals and meet in those facilities. Other groups meet in libraries, medical centers, or churches.

National Support Groups

Our support group helps families who have been newly diagnosed, toddlers, kids, teens and adults living with X and Y chromosome variations. We currently offer education workshops with our local school districts, as well as community and education outreach. We also offer assistance with IEP’s, Regional Center advocacy, provide support groups for all ages, hold an annual picnic, and support research through fundraising activities.

Our 2016 AXYS-KS-Los Angeles Annual Potluck Picnic is just around the corner!

SATURDAY. JULY 30th, 1:00pm to 4:00pm

To be held at 831 N. Clybourn Ave Burbank, CA 91505

ALL Welcome!

This is a great FUN way to catch up with other KS families as well as the boys/adults living with KS or other X and Y chromosome variations to get to know one another. We have a pool and a large space where the boys and young guys can play and mingle along with their families. Bring your favorite dish or drink. We’ll be grilling steaks and burgers. Can’t wait to see everyone! Please RSVP ASAP by contacting Lorena. (see contact information below)

Lorena Quiroga

818/640-5393
lorena.quiroga3@gmail.com

Jacob Flores, Educational Workshops and Outreach

November 5, 2016

mass-trisomy-x-meeting-2016-2

Third Massachusetts Area States Trisomy X Support Group Meeting

“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:

  • 19 families expressed interest in comingmass-trisomy-x-meeting-2016-1
  • 11 families attended our meeting, traveling from all over MA, NH, and NY
  • 7 girls with Trisomy X ranging from 8 years old to 28 years old
  • 3 Girls with Trisomy X had never met another girl with Trisomy X! (So heartwarming to see!)
  • Sharron Close, a pediatric nurse practitioner and scientist at Emory University, and her students, Cathy and Janette, have a special clinical interest and research interest in X & Y variations. They were able to call in to the meeting and help answer questions and gathered ideas from families regarding future research areas.

The highlight of the meeting was seeing the girls with Trisomy X meet other girls with Trisomy X for the first time. It was very heart warming 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!

Warmly,

Joanne & Greg Burke and our daughter, Jessica Burke (17 years old Trisomy X), siblings Michael, Christine and Jamie Burke

 

Jomamaburke@comcast.net

2016 Awareness Proclamation signed by Massachusetts Governor Charlie Baker :

AXYS Mid Atlantic Support Group on Facebook

Support Group Meeting:
October 23, 2016, 1:00 – 4:00pm at Nemours Alfred I. duPont Hospital for Children, 1600 Rockland Road, Wilmington, DE 19803 in Classroom 1.

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

Most Recent Meeting: Sunday, October 18, 2015 from 1pm to 4pm

Meeting Comments:
We had our support group meeting at Dartmouth Hitchcock Medical Center in Lebanon, NH. We had 9 families (14 adults, 6 kids) from ME, NH, VA, CT and VT.

Condition served: 47,XXY – Klinefelter Syndrome

Presenters: Dr. Avin Pothuloori and his fellow student, Dr.Saumya Saini, both Endocrinologists at DHMC, and have also invited our Pediatric Endocrinologist, Dr. Martina Kacer, UVM Medical Center, Burlington, VT.

Group Leaders:
Tim and Donna Pouliot

(802) 476-3395

Hope to see you at the next meeting. Watch email and Facebook for meeting announcements.

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

Save the Date- Saturday, August 20, 2016. Informal get together and planning meeting for the New York TriState KS/SCA Support Group to be held in Brooklyn. Visit the group’s Facebook page, https://www.facebook.com/groups/1750538338524920/?ref=bookmarks for time, address, and other details, to be posted soon.

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 that may have a genetic variation that includes an extra X or Y chromosome. Less than 25% 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 that 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.

Trisomy X Facebook Support Group
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:

https://www.facebook.com/groups/507951752713792/

This is a secret group, so visit the public portal site and request 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 closed and requires members to sign up).

To join the group, please < a href=”https://www.facebook.com/groups/AXYS.XXY/”>click here to sign up.

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

Hello all

Our monthly meeting is from 5 – 6:30 PM 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
Email: xxyKSAlemOR@yahoo.com
Phone: 503.871.2767

We are a group of families who are affected by Klinefelter Syndrome. Some of us have sons who are 47,xxy – Some of us 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.

Karsten Bering Blok posted in XXY / Klinefelter Syndrome Society

KS Global Support Group is hosting a…

Karsten Bering Blok

9:49pm Oct 7

KS Global Support Group is hosting a conference call for parents of KS boys and individuals with KS on November 12th. If you are interested in joining and have not received an invite, please go to http://klinefelters.org/contact.htm and register.

Sabrina (mom): 512 818 3739
or
Karsten (dad): 512 576 3471
http://www.klinefelters.org/index.htm

We also operate the Facebook group: KS Global Support Group

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

https://www.facebook.com/groups/1688349721429898/

https://ksmomblog.wordpress.com/2016/05/21/just-a-ks-mom/

For more information, contact Julie Urban:

(785) 766-4801

< a href=”mailto:jurbanslp@yahoo.com”>jurbanslp@yahoo.com

Support Group Meeting

Sunday, December 11th, 1:00 to 3:00 pm

Lawrence Memorial Hospital

330 Arkansas, Lawrence, KS 66044

Details to be announced

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:
For NC: Lars Johnson- < a href=”mailto:larsjohnson@hotmail.com”>larsjohnson@hotmail.com Ph: 828-243-0534

For SC: Tom Clephane- TC50@yahoo.com Ph: 864-270-8140

For GA & rest of Southeast: Dorothy Boothe- theboothefamily@yahoo.com Ph: 706-224-4437
Facebook:

Support Group Meeting:

When: October 29, from 1-4pm

Where: Nell Hodgston Woodruff School of Nursing at Emory University

1520 Clifton Rd. NE. Rm #276

Atlanta, GA. 30322

Speakers:

Sharron Close, PhD will speak about her efforts to open a clinic in the Atlanta area by the summer of 2017. The other speaker will be Brandi Kern from the Parent to Parent Organization of GA.

For more information, go to our Facebook page at the AXYS Southeastern
Support Group at:

https://www.facebook.com/groups/974953122590486/

Meets twice per year. Next meeting scheduled for Spring 2017.

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: carrieriby@gmail.com or at 585-256-1638

International Support Groups

The Australian Support Group is in its formative stages after meeting with AXYS at the 2011 Families’ Conference.

More details to come, but here is the contact information:

  • Support Group Name: Australian X & Y Spectrum Support
  • Service Area: Australia
  • Mailing Address: 20 Lamb Street, Lilyfield
  • City: Sydney
  • ST/Province: NSW
  • Zip/Postal Code: 2040
  • Country: Australia
  • Leader Name(s): Monica Bray and Rebecca Waters
  • Leader Email Address(es):
  • Monica: monicabray@ymail.com
  • Bec: bec_a_boots@hotmail.com
  • Phone: 61 2 9818 8981
  • 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. This group is “secret” (a Facebook privacy setting) to protect members’ privacy. If you are interested in joining, contact Monica Bray. Facebook Group Name: Australian X & Y Spectrum Support
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.

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.

Her comments:
We are planning to create a greek organization (lets call it support group) for families affected by X & Y chromosome dissorders. 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, then there will be a website too. For the time being, there is only a greek facebook page for the rights of people with dissabilities & special educational needs in Cycladhes, that I m running and checking everyday, 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 Address(es): iren_simeonidou@yahoo.gr & dikaioma.kyklades@gmail.com
Phone: +30 6977660860 & +30 2281062198
Website: (facebook page) https://www.facebook.com/groups/dikaioma.kyklades/
Condition(s) Served: ( All)

 

Online Support Groups

AXYS XXY Global Support Group (Facebook)

AXYS XYY Global Support Group (Facebook)

AXYS Trisomy X/Triple X/XXX Global Support Group (Facebook)

XXYY Project Support Group

Don’t see a support group near your home?
Support groups are started by committed volunteers. See below Click 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 info@genetic.org.

[Link the support groups above to their info pages. Link Facebook pages to their sites.]

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 independent 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 [WHAT DOES “COST-PLUS” MEAN?] 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 (or if you already have an existing group and care to list it on our website or request the above-described services) is to contact the AXYS chapter relations department (see below), and express your interest.

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% in total). This assures you at least 94% 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-pp 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 AXYS’s 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