Resource Groups

California Turner syndrome support group
Dallas, Texas Turner syndrome support Group

The TS community strongly believes it is important to connect with each other locally or those interested in the same topic. TSSUS resource group leaders coordinate events that encourage socialization and sharing of experiences. Some groups are hosting online meetings until they can meet again in person. Resource group events are open to anyone with a TS affiliation although some events may be specific to a certain group, such as women with TS only, such as the Golden Butterflies (women aged 55+).

 

All TSSUS events are listed on the online calendar of events.

 

Contact us if you are interested in connecting with a group leader, hosting a TSSUS one-time event, or have questions about events.

TSSUS Resource Groups 
We are the Alabama Resource Group for the Turner Syndrome Society.  Our focus is to provide basic support and resources to all those affected by Turner Syndrome. As a group, we want to raise awareness of Turner syndrome and fundraise for the Turner Syndrome Society.  All are welcome!  We meet twice a year at various locations throughout the state (event locations vary based on the type of event).  We would love for you to join us.  Please let us know how we can serve you!

Alabama

Elizabeth Fontenot

We are the Alabama Resource Group for the Turner Syndrome Society. Our focus is to provide basic support and resources to all those affected by Turner Syndrome. As a group, we want to raise awareness of Turner syndrome and fundraise for the Turner Syndrome Society. All are welcome! We meet twice a year at various locations throughout the state (event locations vary based on the type of event). We would love for you to join us. Please let us know how we can serve you!

We are the Arizona Resource Group for the Turner Syndrome Society.  Our focus is to provide basic support and resources to all those affected by Turner Syndrome. As a group, we want to raise awareness of Turner syndrome and fundraise for the Turner Syndrome Society.  All are welcome!  We meet several times throughout the year at various locations throughout the state (event locations vary based on the type of event).  We would love for you to join us.  Please let us know how we can serve you!

Arizona

Lisa & Kelly Jasper

We are the Arizona Resource Group for the Turner Syndrome Society. Our focus is to provide basic support and resources to all those affected by Turner Syndrome. As a group, we want to raise awareness of Turner syndrome and fundraise for the Turner Syndrome Society. All are welcome! We meet several times throughout the year at various locations throughout the state (event locations vary based on the type of event). We would love for you to join us. Please let us know how we can serve you!

We are the Central and Northern California Turner Syndrome Resource Group, and are an affiliated resource group of the Turner Syndrome Society of the United States.  Our focus is to provide basic support to all of the girls, women, and their families who have been touched by Turner Syndrome.  We are widely known for our TS Patient Family Education Days, which are held at various major children’s hospitals through Central and Northern California.  We usually have approximately 60 to 70 girls, women, and their families in attendance.  We also meet at various restaurants throughout the SF Bay Area and Sacramento.  We have also held annual TS Awareness Walks for the past three years at our State Capitol Building in Sacramento.  Please contact our group leader to let us know how we can serve you.

California

Rosemary Morris

We are the Central and Northern California Turner Syndrome Resource Group, and are an affiliated resource group of the Turner Syndrome Society of the United States. Our focus is to provide basic support to all of the girls, women, and their families who have been touched by Turner Syndrome. We are widely known for our TS Patient Family Education Days, which are held at various major children’s hospitals through Central and Northern California. We usually have approximately 60 to 70 girls, women, and their families in attendance. We also meet at various restaurants throughout the SF Bay Area and Sacramento. We have also held annual TS Awareness Walks for the past three years at our State Capitol Building in Sacramento. Please contact our group leader to let us know how we can serve you.

Welcome to the Delaware Valley Turner Syndrome Resource Group. Our desire is to provide support and resources to families and friends in the Delaware, Pennsylvania, Maryland area who are touched by TS. We enjoy getting together for activities or sharing a meal about 4 times a year. We plan a fundraiser every year or so to raise awareness in the area as well as funds for further research. Please feel free to come be a part of us as well as invite others to join us.

Delaware

Lynda Taylor

Welcome to the Delaware Valley Turner Syndrome Resource Group. Our desire is to provide support and resources to families and friends in the Delaware, Pennsylvania, Maryland area who are touched by TS. We enjoy getting together for activities or sharing a meal about 4 times a year. We plan a fundraiser every year or so to raise awareness in the area as well as funds for further research. Please feel free to come be a part of us as well as invite others to join us.

The Northwest Florida Panhandle Resource Group creates awareness and offers support and information to all those touched by TS.

Florida

Carrie Odom

The Northwest Florida Panhandle Resource Group creates awareness and offers support and information to all those touched by TS.

The Illinois Resource Group creates awareness and offers support and information to all those touched by TS.

Illinois

Erica Melman

The Illinois Resource Group creates awareness and offers support and information to all those touched by TS.

The Iowa Resource Group creates awareness and offers support and information to all those touched by Turner syndrome.

Iowa

Donna Rice

The Iowa Resource Group creates awareness and offers support and information to all those touched by Turner syndrome.

We are the Minnesota Chapter of the Turner syndrome Society.  Our mission is to reach out and support all girls and women in MN affected by Turner syndrome even though we are based in the Twin Cities area.  We have educational and social gatherings throughout the year.  Most often we meet at local libraries. We try to gear our meetings and events to meet the needs of both families with younger girls with T.S. and adult women with Turner Syndrome.( We've been around since 1983)  We often have funds available to assist members in attending national TSSUS conferences. We would love for you to join us! 

Minnesota

Colleen Daman

We are the Minnesota Chapter of the Turner syndrome Society.  Our mission is to reach out and support all girls and women in MN affected by Turner syndrome even though we are based in the Twin Cities area.  We have educational and social gatherings throughout the year.  Most often we meet at local libraries. We try to gear our meetings and events to meet the needs of both families with younger girls with T.S. and adult women with Turner Syndrome.( We've been around since 1983)  We often have funds available to assist members in attending national TSSUS conferences. We would love for you to join us! 

he Turner Syndrome Society Resource Group of Philadelphia and Southern New Jersey meets several times a year locally to offer support, network, enjoy social and artistic events, and fund raise for all affected by Turner Syndrome. Examples include Brunch at Fado in Philadelphia, Met Live in HD in Somerdale, NJ, and Uno Dough Raiser Days in Deptford NJ.

New Jersey

Nicole Boris

he Turner Syndrome Society Resource Group of Philadelphia and Southern New Jersey meets several times a year locally to offer support, network, enjoy social and artistic events, and fund raise for all affected by Turner Syndrome. Examples include Brunch at Fado in Philadelphia, Met Live in HD in Somerdale, NJ, and Uno Dough Raiser Days in Deptford NJ.

This resource group is hosted by the OUHSC Turner Syndrome Clinic (TSC) at the OU Children’s Endocrinology Clinic in Oklahoma City.

Oklahoma (OKC)

Amanda Patterson

This resource group is hosted by the OUHSC Turner Syndrome Clinic (TSC) at the OU Children’s Endocrinology Clinic in Oklahoma City.

We are the Northeast Oklahoma Turner Syndrome Resource group. Our mission is to provide support and education to those in our community that want to learn about TS or are directly affected by TS. We meet every 3 months at the Brookside Library, in Tulsa Oklahoma. All are welcome! We have our annual Chasing Butterflies Walk every October at Whiteside park to raise awareness of Turner syndrome and also raise funds for the Turner Syndrome Society. We also have a booth every February at the Tulsa Women's Living Expo to spread awareness.

Oklahoma (Tulsa)

Jenifur Davidson

We are the Northeast Oklahoma Turner Syndrome Resource group. Our mission is to provide support and education to those in our community that want to learn about TS or are directly affected by TS. We meet every 3 months at the Brookside Library, in Tulsa Oklahoma. All are welcome! We have our annual Chasing Butterflies Walk every October at Whiteside park to raise awareness of Turner syndrome and also raise funds for the Turner Syndrome Society. We also have a booth every February at the Tulsa Women's Living Expo to spread awareness.

Oregon Resource group offers support to anyone who has been affected by Turner syndrome. We have meetings every other month, that are both educational and social. There are also opportunities to just get together when someone needs talk one-on-one.  It is our desire to get the word out to our local community about Turner syndrome.  One of the activities that we participate in regularly is the Butterfly Clinic at the children's hospital in Portland, Oregon.  We would love for you to be our guest at the next one!

Oregon

Glenna Gibson

Oregon Resource group offers support to anyone who has been affected by Turner syndrome. We have meetings every other month, that are both educational and social. There are also opportunities to just get together when someone needs talk one-on-one. It is our desire to get the word out to our local community about Turner syndrome. One of the activities that we participate in regularly is the Butterfly Clinic at the children's hospital in Portland, Oregon. We would love for you to be our guest at the next one!

We are the Turner Syndrome Local Resource Group of PA! Our focus is to help educate, support, and network within the state of Pennsylvania about the medical condition of Turner Syndrome. We welcome everyone! We meet in various locations in the Harrisburg/Central PA area as well as on Bloomsburg University's campus throughout the year. Our biggest event is the Butterfly Walk, and that is always an exciting time! Please join us at our events!

Pennsylvania

Audrie Noll

We are the Turner Syndrome Local Resource Group of PA! Our focus is to help educate, support, and network within the state of Pennsylvania about the medical condition of Turner Syndrome. We welcome everyone! We meet in various locations in the Harrisburg/Central PA area as well as on Bloomsburg University's campus throughout the year. Our biggest event is the Butterfly Walk, and that is always an exciting time! Please join us at our events!

The Central Texas Resource Group creates awareness and offers support and information to all those touched by TS.

Texas (Central)

Sarah Keip

The Central Texas Resource Group creates awareness and offers support and information to all those touched by TS.

We are the Dallas Team Resource Group in the Dallas, TX and surrounding areas for the Turner Syndrome Society. Our goal is to reach out to TS families of all ages and backgrounds. We meet approximately once every quarter for fun social gatherings and picnics. We always have so much fun! We do our best to work with each other as a team to provide informational resources and fun activities. Everyone is welcome!

Texas (Dallas/FW)

Dorothy Baume

We are the Dallas Team Resource Group in the Dallas, TX and surrounding areas for the Turner Syndrome Society. Our goal is to reach out to TS families of all ages and backgrounds. We meet approximately once every quarter for fun social gatherings and picnics. We always have so much fun! We do our best to work with each other as a team to provide informational resources and fun activities. Everyone is welcome!

We are the Nation's Capital Resource Group of the Turner Syndrome Society.  It is our mission to assist women and girls with TS, as well as their parents/guardians.  Our group serves Northern Virginia, Maryland, and the District of Columbia. We meet 3-4 times per year, hosting educational meetings and social events, such as our Annual Potluck Picnic.  In 2015, in collaboration with the Central VA Resource Group, we hosted our 1st Annual TS Chasing Butterflies Walk in Fredricksburg, Virginia.

Virginia (Northern VA, Maryland, and DC)

Ashleigh Dorfman

We are the Nation's Capital Resource Group of the Turner Syndrome Society. It is our mission to assist women and girls with TS, as well as their parents/guardians. Our group serves Northern Virginia, Maryland, and the District of Columbia. We meet 3-4 times per year, hosting educational meetings and social events, such as our Annual Potluck Picnic. In 2015, in collaboration with the Central VA Resource Group, we hosted our 1st Annual TS Chasing Butterflies Walk in Fredricksburg, Virginia.

The Washington Resource Group creates awareness and offers support and information to all those touched by TS.

Washington

Deanna Carey-Crumpton

The Washington Resource Group creates awareness and offers support and information to all those touched by TS.

Group Resources

What is a Resource Group?

A Resource Group is a volunteer-led group that offers Turner syndrome (TS) resources and support to those touched by TS, within a specific geographical location. The goal of a resource group is to connect people who are experiencing similar situations. 

Participants of TS resource groups come together to share their stories, connect with others, and form lasting friendships.  Resource groups may offer local community resources such as references to local physicians familiar with TS, opportunities to build the TS community and connections with those who have similar life experiences. Group leaders may organize educational opportunities that offer valuable information on TS-related topics, coordinated by professionals or guest speakers.  A resource group is a source of encouragement and connection with those just like you.

Please Note: A resource group should never be used as a replacement for your standard medical care.

 

Who are Resource Groups for?

Resource groups are available to anyone within the TS community.   

 

Who Can Lead a Resource Group?

Resource groups can be led by anyone within the TS community. This includes a professional, a person with TS, or a family member.

 

When Do Resource Groups Meet?

Resource group meetings vary depending on the group leader and group members' availability. TSSUS can connect you with local resource groups, which are located throughout the U.S.

In some areas, we have individual volunteers that host independent events such as meet and greet or other gatherings. These volunteers are available to share information and support as well.  If you would like to host an individual event, please contact Deborah Rios at deborah@turnersyndrome.org

 

What activities do Resource Groups provide?

Some groups focus on social and support events, while other groups may hold fundraising and awareness opportunities such as Chasing Butterflies walks. 

 

How do I start a TSSUS Resource Group?

Contact Deborah Rios at deborah@turnersyndrome.org to discuss the opportunity to organize a group in your community. We offer resources to help you get started and promote your events to the local community and/or state. 

 

What are the requirements for a Resource Group Leader?

 

1.  Agree to support the TSSUS mission and vision, as well as represent and promote TSSUS in your local community

 

2.   Be a current paid member of TSSUS 

 

3.   Initiate and host 3 successful events to determine local interest

 

4.   Commit to a one-year term as a local leader and fulfill the duties as outlined within the local resource group handbook.