Turner Syndrome Society of the United States

This non profit may do some good ie ts conference ever year. It is also seems to be very clique. If one differs and quotes TS medical guidlines . TSSUS does not give real answers website or the social sites . When asked. This has been happening for a long while. Leading to question what's going on . At this time for these reasons I can not support TSSUS. Then feedback would be that this all may or may not seem to others TSSUS to only want one type cookie cutter ts supporters and not fully inclusive. This doesn't seem to be within other TS support websites or groups online even ones in other countries.

Organizations like TSSUS are so iimportant in peoviding information and support to those of us living with TS. They have helped me to be better informed to monitor my health concerns and provided me with a community of support.

I have had a very positive experience with TSSUS. They do everything they can to help children (and women) with T.S. They hold an annual conference for girls, women, and their families that is very informational.

My daughter was diagnosed at 14 and felt freaky afterwards. We knew nothing about Turners and neither did her doctors. Turner’s Society to the rescue with answers and pamphlets that we could pass to the doctors. Robin just turned 50 and has had lots of issues but Turner’s Society still lends support.

Is a great organization that help girls with Turner Syndrome and their families.

TSSUS Is a wonderfully informative and inclusive organization that has helped me feel like I'm not so alone in my experience as a Turner Syndrome patient. I was awarded a scholarship from TSSUS for this year's national conference in Orlando, FL. I look so forward to finally getting to meet other people with TS, as well as the TSSUS staff and volunteers.

My daughter was diagnosed with TSS when she was 14 and she is now 28. We have received incredible support from TSSUS. We thoroughly enjoy attending the annual conferences. We also appreciate the updated medical information that we have shared with medical and educational professionals.

I love the conference but I would recommend more kareoke time so we have a chance to sing several songs������

The staff work hard to support all impacted by TS. They are always available to answer questions and offer reassurance. It's an invaluable resource!

Our daughter was diagnosed at the age of 1 1/2 with Turner Syndrome (TS). It was such a scary time because our family had never heard of TS. She is now 17yo and TSSUS has been our families most valuable resource. Through TSSUS we have attended educational seminars, social events and networked with expert doctors all over the US. We are truly thankful for the wonderful work that they do!

TSSUS has always been there for our family. When my daughter was first diagnosed with Turner syndrome, the first resource that we found was from the society. They were able to connect me with other parents and families in my area. Without their credible information and support, it would’ve been a much more confusing time for us. As well, our Doctor’s have consistently relied on guidance and information from the website. The whole office is there for you whenever you need assistance.

I have been blessed with a community and vital information related to my health. This is so pertinent and appreciated. I have been motivated to take better care of myself and know how to better care for my self because of the medical information TSSUS provides. It is so fun to attend conference yearly and catch up with friends and meet new ones. I look forward to it all year long.
Thank you for what you do to support women and families with TS. Keep up the good work!!!

I was diagnosed at 10 years old when my Dr. referred me to a major hospital because I “fell of the height charts”. 25 years later I had the wonderful experience of meeting other women with TS at the National Conference of the newly formed TSSUS. I am now 66 years old and have been an active member for 30 years. The medical information, the friendships and the support have been true blessings!

TSSUS is the place where I am reminded that I am not alone. It connects me with resources, lifts up stories of joy, and acknowledges the struggles of living with Turner Syndrome. I am so grateful!

Have turned Sunday been an amazing support excited for conference

The Turner Syndrome Society of the United States is such a great organization for anybody who is affected with Turner syndrome. This organization keeps the community updated, informed and loved. They are here to help support those in every aspect with research as it is ever-changing. They are always there to answer questions help find answers and just be an overall support system. I have been blessed to be part of this amazing organization and will continue to spread the awareness and help the organization continue its mission and journey. Thank you so much TSSUS keep up the good work. As we say, we are butterfly strong.

TSSUS has been a part of our lives since my daughter was born 17 years ago. Every step of the way we have been in contact with TSSUS. Without TSSUS I would not have been able to advocate and teach my daughters doctors what she needs, what is required and how to best treat her. With their guidance, the knowledge they have given us and the cooperation of great doctors, my daughter has gotten the best possible care and is ready to transition into adulthood. Because of their amazing support, I decided to become a board member to share the knowledge they gave us and help others in the same situation as us. I will forever be grateful for TSSUS

The TSSUS has help me and my family navigate the challenges associated with Turner Syndrome and has provided us with a fantastic community of support every step of the way. TSSUS is leading the way in TS research and makes my life better every day!

As a mother of a daughter diagnosed with Turner Syndrome, this organization has been a wealth of information and resources for us as we navigated her diagnosis. We were informed of research opportunities and the latest guidelines to share with her medical professionals. It offers many opportunities to be a part of the TS community for TS children, adults, and their families.

As a physician, this group has been invaluable to both my patients and myself. It is wonderful to have a newly diagnosed girl meet others in this group to know she is not only. Working with the wonderful women and girls in this group has expanded my knowledge of TS beyond the medical arena and helped me to further understand the patient perspective.

TSSUS has been instrumental in helping our family navigate a newly diagnosed child as well as supporting future research and education throughout the community. Their newsletters, annual conferences and events that connect the community together are invaluable to our family.

TSSUS has been a wonderful asset throughout my daughter's Turner Syndrome journey. I have gained support through social media and used countless resources from the website. The annual conference gives women with TS, parents, and children such an overwhelming sense of community. It is truly a blessing to my family.

I have Turner syndrome. The TSSUS has been the best organization. I appreciate everyone involved and all that they do. They work hard to spread awareness and get fellow Turner syndrome butterflies to meet up, chat, and share stories. They are currently hard at work planning the TSSUS annual conference this year in Orlando Florida. There are seminars, doctors, and educational events to help spread awareness and also fun dance parties for all the Turner syndrome butterflies and their families. My favorite non profit organization

When I first got diagnosed with turner syndrome I contacted the society and received great information.The staff is wonderful They are so undetstanding

When my daughter was diagnosed with Turner Syndrome in 2010, she was 12 years old. I had never even heard of Turner Syndrome before, so I had to learn all about it. I was referred to TSSUS by the doctor team. TSSUS was immediately helpful with all sorts of resources and medical screening guidelines. We have attended a couple of the national conferences where I had the opportunity to witness how TSSUS has been a positive influence on many families' lives. I have been a recurring monthly donor for many years and have full confidence that the money is spent in a variety of ways that provides support to the TS community.

I am so grateful! The Turner Syndrome foundation gives me a wider scope as an international member. I am from Ecuador and a physician with the condition.

So helpful! They provide useful information and organize events.

I was diagnosed with Turner's Syndrome 50 years ago.

Today, the Turner's Syndrome Society offers a wealth of information about the genetic condition.

It helps families and their loved one through the many physical and emotional issues associated with the condition.

Thank you for your continued service ������

SOY YULI ELVIRA GUEVARA INFANTE, PRESIDENTE FUNDACION SINDROME DE TURNER COLOMBIA.MADRE Y CUIDADORA DE HIJA PACIENTE CON SINDROME DE TURNER.

www.sindromedeturnercolombia.jimdo.com

HACE 12 AÑOS INICIAMOS CON EL OBJETIVO DE AYUDAR A LAS PACIENTES QUE PADECEN DICHO SINDROME.

LA FUNDACION SINDROME DE TUNER DE ESTADOS UNIDOS HA SIDO UN GRAN EJEMPLO Y APOYO CON SU EXPERIENCIA PARA ESTRUCTURAR LOS SERVICIOS QUE REQUIEREN DICHAS PACIENTES.

Our granddaughter's pediatrician was aware that at the age of 2 1/2 she had plateaued in growth, he sent her to a pediatric endocrinologist. we all were devastated at the diagnosis and quickly googled everything we could about Turner Syndrome. the next step that was recommended was to connect with TSSUS for support and help. What an amazing place, it was if every worry and question was lifted from us, there was a great reassurance that we were not alone in this. I was with at the first conference to absorb like sponges everything we could. The connections that our family was able to make with other parents, families and women that had been living with Turners for many years turned our anxieties to hope. Now as she is getting older, and fully understands what a life of Turners Syndrome will be for her, our granddaughter is gaining courage and loves to share with others what it is like to live with Turners. TSSUS has been a God send for us, and I know they continue to help all the families struggling with new diagnoses as well as continuing support for all affected. This is why I believe in this nonprofit group and will continue to be a supporter to help others and allow funds for more research and medical care.

TSSUS was instrumental in navigating an early diagnosis and creating a support system for our family. I’m not sure how we could have made it through our child’s first few years without them!

I have benefitted greatly by being part of this organization for 26 years. I have learned through my experiences with other members, researchers, and medical experts, and formed some good friendships as well.

As a woman with Turner Syndrome I have experienced how TSSUS has built a network of professionals who are working to answer questions about all the varying medical and other concerns related to having Turner Syndrome. Girls are getting diagnosed sooner, getting growth hormone to increase height, getting better cardiac care, and more appropriate hormone replacement therapy then ever before. I personally would not have gotten answers to some of my questions if I had not been involved with TSSUS and attended national conferences.

I am the mother of a Turner’s Syndrome woman who is now 41 years old. We learned of her diagnosis when she was four months old. At that time TSSUS did not exist. We navigated her diagnosis with a caring team of pediatric endocrinologists, but had no contact with other Turner’s families. Today, because of TSSUS, our daughter has a wide network of friends, researchers, medical providers, and support professionals. This organization and the people at TSSUS headquarters in Houston are hard working and deeply committed to helping all members of the Turner’s community stay informed; to educating the medical and lay communities about all aspects of Turner’s Syndrome and the resources available to promote the health and well being of those diagnosed with Turner’s Syndrome; to advocating for critical research about the medical, psychological, and social challenges of Turner’s Syndrome; and (not least) keeping all of us touched by this condition in good spirits and optimistic about the future of our Turner’s children. TSSUS is a role model for how to build an organization that really makes a difference for all of us in the Turner’s Syndrome family and keeps the light shining on a condition that not many people know about or understand.

You get to meet alot of new people and there would be thousands of people coming. We traveled different states to learn the experience. We also learn new things about TS and problems we all have of part of the TS.

TSSUS does not appropriately serve their community, especially in the area of mental health support.

I have been a member of the TSSUS organization since 1990 when my infant daughter was diagnosed with Turner Syndrome. I was devastated by the news, and fortunately found my way to the newly-formed TSSUS. I phone the number, and a charming young woman answered the phone. When I explained that my daughter has just been diagnosed and I was frightened and needed information, the young woman who answered the phone replied brightly, "Oh! Really? Well, don't worry. She'll be fine. I have Turner Syndrome!" The welcome, the service, the information, the wonderful annual conferences, all are a precious part of our family's history. As long as I live, I will contribute what I can to help sustain this organization.

My name is Jeane. I was born in Alaska back in the 1960s. When I was 12/13 yrs old, the Alaska pediatrician noticed I was not growing. He invited a doctor from Children's in Seattle, to come up to see me. I was put on growth hormones, at the time. I was also experiencing ear aches at the time.
As I got into my late 30's, my body developed high blood sugars, and early on-set cataracts. Along with having minor hearing loss, and am now wearing hearing aids. I've also gone through cataract surgery and getting excellent treatment for my blood sugars, which doctors say "aging" is the cause.

As a physician caring for individuals with Turner Syndrome, there are many "learning tools" for both my patients and me. It's been an education over many years, and I am indebted to the TSSUS . Part of my office counseling includes viewing the joyful TSSUS Website. I click on the tremendous educational and social links.
Best wishes now and for your bright future,
Angela Lin, MD, Mass General for Children, Boston, MA

I am so grateful to TSSUS. My daughter was diagnosed 15 years ago, and TSSUS became our go to source of guidance and hope in the early years of her diagnosis. We were living abroad and had no other resources. It was truly a life saver.

Today, I am volunteering in Spain for a similar society, and it amazes me the generosity of TSSUS sharing their materials so we can translate them and post them in Spanish for others to benefit as I benefited 15 years ago. Furthermore, I shared back the translated materials, so now I can help TSSUS, and create a stronger network of TS socieities, which is critical considering how rare the condition is.

I have ts and found this organization not helpful . Their social media director does not know what to do and overall very unwelcoming presence. Trying to get in touch they never get back. I.found other organizations more helpful.

I am 53, and never imagined I would be led to so many connections I call "Sisters". My mother found out, through a Dear Abby column, all information To guide her to more awareness and help.The TS Society is amazing and I am proud to call myself part of a great "Sisterhood" chapter in New York.

The Turner Syndrome Society of the US gave my daughter her first experience of meeting another girl with TS. For years she "knew" she had TS and went through daily injections and more doctor visits than her friends, but it wasn't until she met four other girls with Turner syndrome that she said, "I thought I was the only one with TS." Being able to give her a place to meet with girls going through the same thing she goes through is so valuable! TSSUS is the only organization that offers support in that kind of way and we will forever be grateful for the hard work and dedication to bringing people with TS together that TSSUS has. Every donation helps do this very thing and so much more! Please donate today!

As a local officer in Kansas City I can assure you your money will be used for the purpose you intended.. Helping women of all ages touched by Turner Syndrome. There are only 2 paid employees at the National Office in Houston Texas and all local officers are volunteers. Local activities are approved through a funding committee to ensure no money is wasted. Your donations are much appreciated and necessary to keep the society alive and moving forward.