Support Groups

Support Groups2018-09-21T17:53:23+00:00

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 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 & 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, lorena.quiroga3@gmail.com

(DE, Washington, DC, MD, NJ, NY, PA, VA & WV)

AXYS Mid Atlantic Support Group on Facebook

Contact: Sandy Schindler

sandyschindler21@gmail.com

302-893-3093

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.

Directions

Campus Map

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

Guest Speaker:

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
(302) 893-3093

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, 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
Email: xxyKSAlemOR@yahoo.com
Phone: 503-871-2767

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.com

913-568-8441

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:

Annual Pool Party Social Event

WHEN: Saturday, August 25th, 12pm-5pm

WHERE: Hosted by Tom Derby (hosted last year’s event)

4688 River Court
Peachtree Corners, GA 30097

Special Guest: Ryan Bregante

Please RSVP the contacts below since Tom Derby is catering this event and needs a head count so he can order the correct amount of food.

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

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

Meets twice per year.

Contact: Carrie Riby: carrieriby@gmail.com or 585-256-1638

Support Group Meeting:

Saturday, September 22, 2018
1 -4pm
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 carrieriby@gmail.com

San Francisco Bay Area Support Group on Facebook

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

Support Group Meeting

Sunday, September 30, 2018
12PM – 3PM

Cuesta Park
615 Cuesta Drive
Mountain View, CA
Look for yellow balloons marking our picnic spot

RSVP and Questions to:

Hannah Acevedo
hannahacevedobcba@gmail.com
415-816-5577

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.


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

AXYS Chicagoland Connections Support Group Meeting Flyer

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!

Kerry
ConnectionsXY@gmail.com

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.

Support Group Meeting:

October 7th, 2018
1-4pm

Mt. Yale Room
Children’s Hospital Colorado
Anschutz Medical Campus
13123 East 16th Avenue
Aurora, CO  80045

www.childrenscolorado.org/your-visit/locations/aurora/

There will be an update on the eXtraordinarY Kids Clinic, a speaker and then some time for open discussion.  It will be an adult-only event. Babysitting will not be provided.

Dr. Shanlee Davis will be our guest speaker.  She will be talking about cardiometabolic health which applies to all conditions and all ages.

Please RSVP to Susan Fasone  jsfasone@comcast.net

Support Group Meeting:

The first meeting of the AXYS Florida Support Group!

September 1, 2018
12:30-4:30 pm

2190 Springs Landing Blvd.
Longwood FL 32779

RSVP: Tina Hanif via Facebook Messenger or through the AXYS Florida Support Group Facebook page

Contact: Tina Hanif, Thanif0705@ymail.com

AXYS Florida Support Group on Facebook

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 (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 (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 Address(es): iren_simeonidou@yahoo.gr & dikaioma.kyklades@gmail.com
Phone: +30 6977660860 & +30 2281062198
Website: (Facebook page) facebook.com/groups/dikaioma.kyklades/
Condition(s) Served: ( All)

Condition-specific groups

47,XXY

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

Facebook Group

Support Group Meeting:

NEXXYS (New England XXY Support) will meet on Saturday, April 14, 2018 from 1:30 pm – 4:30 pm. The meeting will be held at the Thayer Public Library, 798 Washington Street, Braintree, Massachusetts 02184. We will be in the large conference room upstairs.  This is a general support group meeting for all those affected by KS/XXY. To RSVP or with any questions, contact Bill Mulkern at hume_rules@msn.com.

 

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

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).

47,XYY

XYY Global Support Group on Facebook

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

47,XXX

November 5, 2016

Massachusetts Area Trisomy X Support Group

Massachusetts Area Trisomy X Support Group

Third Massachusetts Area States Trisomy X Support Group Meeting

Massachusetts Area States Trisomy X Support Group

“Taking it to the MaXXX”

Come Join Us

 Our Goals for this meeting:
  •  Support girls with Trisomy X and their families
  •  Get to know each other through discussions and experiences
  •  Reunite our families plus welcome and meet new families
  •  Increase awareness of Trisomy X
  •  Plan for future support meetings
  •  Share Massachusetts Proclamation- National X & Y Chromosome Variation Awareness Month of May
  •  Any additional ideas/news

Date: Sat. 10/27/18
Time: 1-4 PM
Place: Good Shepard Parish, 99 Main St., Wayland, MA 01778

Girls/Ladies with Trisomy X and their families are welcome. We will have snacks, drinks and desserts.  Feel free to bring any food/drinks to share. Craft activities will be available and babysitting for those who need it during our parent discussion.

Kindly RSVP by 10/22/18 to Joanne Burke, Parent of Jessica Burke (Trisomy X), age 19 yrs
Jomamaburke@comcast.net

Support Group News

The group recently received a new proclamation from Governor Charlie Baker of the State of Massachusetts proclaiming May National X/Y Chromosome Variation Month for 2018!

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

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.

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!

Contact: Carol Vigo, manya20@hotmail.com

Sydney XXYY Event 

Date: Saturday, 21st October 2018

Time: 10 AM

Where: Blaxland Riverside Park, Sydney Olympic Park NSW

Other Variations

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!

48, XXXY Medical Syndrome Facebook Group

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 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 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.