Grupos TSSUS locales
California Turner syndrome support group
Dallas, Texas Turner syndrome support Group

Creemos que es tan importante para usted conectarse con otros miembros de la comunidad TS como para usted comprender las necesidades de atención médica. Apoyamos y alentamos a nuestros miembros a que en su localidad se conviertan en líderes de grupos de recursos de TS en su comunidad. Los líderes están dedicados y apasionados por crear conciencia y ofrecer eventos para satisfacer las necesidades de las comunidades .

Actualmente tenemos grupos locales en los siguientes estados / regiones.

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.

 We are a group of ladies around the age of 60 and above and we meet once a month online and have had gatherings in person in the past. We'd love to hear from you and have your join our fun group.

Online Golden Butterflies

Dorothy Baume and Barb Flink

We are a group of ladies around the age of 60 and above and we meet once a month online and have had gatherings in person in the past. We'd love to hear from you and have your join our fun group.

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.

Grupo Recursos

¿Qué es un grupo de recursos?

Un grupo de recursos es un grupo dirigido por voluntarios que ofrece recursos y apoyo para el síndrome de Turner (ST) a las personas afectadas por el ST, dentro de una ubicación geográfica específica. El objetivo de un grupo de recursos es conectar a personas que están pasando por situaciones similares.

Los participantes de los grupos de recursos de TS se reúnen para compartir sus historias, conectarse con otros y formar amistades duraderas. Los grupos de recursos pueden ofrecer recursos de la comunidad local, como referencias a médicos locales familiarizados con el ST, oportunidades para construir la comunidad del ST y conexiones con personas que tienen experiencias de vida similares. Los líderes de grupo pueden organizar oportunidades educativas que ofrecen información valiosa sobre temas relacionados con el ST, coordinadas por profesionales o oradores invitados. Un grupo de recursos es una fuente de aliento y conexión con personas como usted.

Tenga en cuenta: un grupo de recursos nunca debe utilizarse como reemplazo de su atención médica estándar.

¿Para quién son los grupos de recursos?

Los grupos de recursos pueden ser establecidos por cualquier persona dentro de la comunidad de ST: usted puede ser un padre, una mujer con ST, un miembro de la familia o un amigo.

¿Quién puede liderar un grupo de recursos?

Los grupos de recursos pueden ser dirigidos por cualquier persona dentro de la comunidad TS. Esto incluye: un profesional, una mujer con ST u otros familiares o amigos.

¿Cuándo se reúnen los grupos de recursos?

Las reuniones del grupo de recursos varían según la disponibilidad del líder del grupo y de los miembros del grupo. TSSUS puede conectarlo con grupos de recursos locales, que se encuentran en todo EE. UU.

En algunas áreas, tenemos voluntarios individuales que organizan eventos independientes como encuentros y saludos u otras reuniones. Estos voluntarios también están disponibles para compartir información y apoyo. Si desea organizar un evento individual, comuníquese con Deborah Rios en deborah@turnersyndrome.org .

¿Qué tipo de actividades ofrecen los grupos de recursos?

Algunos grupos se enfocan en eventos sociales y de apoyo, mientras que otros grupos pueden ofrecer oportunidades de recaudación de fondos y concientización, como Chasing Butterflies. camina. Puedes participar en cualquiera de los eventos realizados por tu grupo local.

¿Cómo inicio un grupo de recursos?

Si no existe un grupo de recursos locales en su área, le recomendamos que comience el suyo. ¡A TSSUS le encantaría ayudar! Ofrecemos varios recursos para ayudarlo a comenzar, como esquemas de reuniones, capacitación de liderazgo sobre cómo servir como un líder de grupo eficaz, ideas sobre cómo y dónde organizar una reunión, y ayudar a promover sus reuniones en su comunidad local y estado. Además, ayudamos a nuestros líderes de grupos de recursos publicando su información de contacto (solo por correo electrónico a menos que se solicite lo contrario) y los detalles de la reunión en nuestro directorio de grupos de recursos www.turnersyndrome.org/local-groups .

¿Cuáles son los requisitos para un líder de grupo de recursos?

1. Acepte compartir la misión y visión de TSSUS, así como representar y promover TSSUS en su comunidad local.

2. Sea un miembro pagado actual de TSSUS

3. Iniciar y organizar 3 encuentros y saludos exitosos (reuniones en persona) para determinar el interés local

4. Comprometerse a un período de un año y cumplir con los deberes descritos en el manual del grupo de recursos locales.

Si desea obtener más información sobre cómo iniciar un grupo de recursos en su área, comuníquese con:

Deborah Ríos

Director de Servicios para Miembros de TSSUS

deborah @ turnersyndrome.org .