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From a daughter’s heart

My mother, Paula, wearing  red and myself at 8 years of age on the right.

           My story is a little unique, and hopefully inspiring, to others because as an adopted child Turner Syndrome affected my life in such a big way. 

            My mother, Paula, was diagnosed in the 1950’s with the second known case of TS. Of course at this time little progress in research was made and my mother was treated with ‘experimental’ hormones and medicines. My mother was short in stature (4″8) but lived her life to the fullest and not letting anything compromise pursuit of her dreams. My mother attended college, had a career, and married my Dad at the age of 20. Her biggest dream in life was to become a Mommy and TS was certainly not going to be an obstacle in any way. In June 1973, they adopted a healthy baby girl, (ME), and my mother’s life could not have been more happy and perfect. My mother lit up a room with her smile and very positive, pleasing personality. She was the most caring and loving mother for 13 years of my life. As a child I was unaware that my mother even had TS, whether some of the symptoms were hidden very well from me, or her positive mentality out weighed any pain she could have been suffering.

            One Sunday in March 1986, my mother was having severe back pain to the point she had to be taken to the emergency room. That night my Dad came home and told me we would be going to the hospital first thing in the morning because my mom needed to have emergency open-heart surgery. At 13 years old, I had no idea how the next day would impact my life forever. My mom passed after being on the operating table for one hour. They basically told me in terms that I could understand at that age, she had a leak in her heart and when they tried to repair it, the other side started to rupture as well. My mom had the biggest heart that could no longer function in her tiny body. Life was never the same again. 

            Years later I started to research TS. I had been very sheltered after my loss and my family did not discuss the extent of my mother’s condition. I was astounded by all the traits of TS that my mother had and the comforting validation of why she had them. It made more sense to me at this late age as an adult. The clarity was strong to me, growing up with a mother who had this syndrome and all the reasons why she was an amazing woman.”


Note – Cardiac issues in TS can be treated and managed through ongoing care from a cardiologist. Individuals with Turner Syndrome are urged to have a baseline cardiac MRA. The emergency contact card can alert first responders in the event of a medical emergency. If you have questions, please speak with a doctor for medical advice.
Learn about cardiac issues



Custom made cards for your protection

“My Guy & Me”… Acknowledging the important males in your life.

Although Turner Syndrome only occurs in females, there is no denying the impact it can have on men as well. Fathers, grandfathers, brothers, sons, partners, doctors and friends can all have a connection to Turner Syndrome through the women in their lives, and they certainly play a role in caring for their loved ones. We would like to thank the men who support Turner Syndrome girls by providing them with unconditional love and support. We want to hear from you, stories of men who have been champions for the cause in your own life!

We are launching the “My Guy & Me” initiative as a way to express our gratitude for male support given to Turner Syndrome, and highlight the role men can play in raising awareness of this women’s issue. If there is a male in your life that you would like to thank, we invite you to submit a photo and a statement at the link below explaining how your guy has supported you. We will then feature 3 submissions in a post on the TSF page.

Not only is this a chance to highlight how the men in your life have cared for you, but also a chance to show the importance of men in addressing Turner Syndrome overall. Turner Syndrome may be a women’s health issue, but we are grateful to the men who make finding solutions and providing care a priority!

SUBMIT YOUR PHOTOS TODAY: https://form.jotform.com/72846035186158

If you have any question please contact media@tsfusa.org

THANK YOU! 

CHECK OUT THE SUBMISSIONS

Meet our Advocacy Coordinator, Liz Carmines

My name is Liz Carmines and I am thrilled to be the Advocacy Coordinator for the Turner Syndrome Foundation. I am a student in my senior year at Monmouth University, with a double major in Political Science and Sociology. I am involved with our school’s Sociology Club and Model United Nations Team, and I love to travel! Prior to working at TSF, I had never heard of Turner Syndrome before and was mostly looking forward to the professional experience this job would provide. However, after reading the materials on the website and talking to our Founding President, Laura Fasciano, I gained a passion for this cause. I have realized that just because it is not an issue known to the public, does not mean it is not important. It is troubling to know that 1 in every 2000 girls are affected by Turner Syndrome, but I am even more concerned about the fact that up to 99% of affected fetuses are miscarried. Knowing this information, and hearing stories of people who have been impacted personally has given me the drive to devote myself to raising awareness and gaining support for Turner Syndrome patients.

The focus of my work has been reaching out to legislators, business professionals, and other community members in hopes of broadening our network. Relations with legislators are important to pass a bill that would establish centers of care and fund research, so Turner Syndrome is given support structurally. Business professionals, specifically women, have the resources to give grants and share information with their networks, as well as organizing events to benefit the cause. Further, every community member can make a difference by giving a donation, raising funds, organizing a community event, becoming a volunteer, and so much more. Turner Syndrome has the potential to affect anyone in some way, so raising support for the disorder is everyone’s responsibility. I am here to provide you with the tools to support the Turner Syndrome Foundation, so please reach out to me if you are interested in making a difference in your community and in our world.

Email: advocacy@tsfusa.org

Rally for Medical Research

2017 Rally for Medical Research

Turner Syndrome Foundation representatives attended the 2017 Rally for Medical Research this September in Washington, DC. The meetings and reception were held in the Grand Hyatt Hotel and on Capitol Hill. Aligning with advocacy groups and House and Senate legislators, TS advocates were there to raise awareness of this widely unknown disorder that affects girls from birth. 

The Rally for Medical Research group had over 350 participants visiting with more than 250 House and Senate offices to push for robust, sustained, and predictable funding increases for the National Institutes of Health (NIH).  We all know that these increases are vital if we are to accelerate efforts to improve the outlook and quality of life and find cures for people all across our nation who are suffering from hundreds of diseases and health conditions.

Rally for Medical Research Video 

Unified support for federal funding for medical research is critical to the health and well-being of our citizens and for the economic security and global leadership of the United States. In fiscal years 2016 and 2017, Congress provided the first significant increases in funding for the NIH in more than a decade. Now is the time to build on that momentum by urging Congress to continue making medical research a national priority by providing robust, sustained, and predictable funding increases for the NIH in 2018 and beyond.

Turner Syndrome Foundation’s efforts directly benefit those affected by Turner Syndrome through support for the prestigious research community. The starting point for this advocacy initially began with Genetics Day on the Hill in 2011. Medical advisors of the Turner Syndrome Foundation expressed an urgent plea for advocacy to support Turner research through NIH funding. TSF representatives converged in a unified voice and were met with promising intrigue and support from legislators. This advocacy effort resulted in 2013 legislation declaring February as Turner Syndrome Awareness Month in New Jersey. In conjunction with this legislative advocacy, TSF helped to organize the first Turner Syndrome specialized center of care at Saint Joseph’s Hospital. This was the first of many new relationships and stewardship for a greater access to care and support for  the people we serve. 

A tremendous task lies before us to achieve advocacy for researchers and medical care in regions of every state, and for the nation as a whole. This effort must be expansive and wholly supported.

Advocacy never ceases -Your voice can influence a new philanthropy to make this achievement possible. People and significant financial support are essential for this cause to advance. 

We invite you to partner with Turner Syndrome FOUNDATION.

Contact: Email philanthropy@tsfusa.org

Call: 800-594-4585

Advocates are called upon to join this effort to support medical research and awareness activities.

TAKE ACTION!

9/2017

What a stimulating and learning experience I shared with Turner Syndrome foundation in DC. It was wonderful to speak to and share with all of the people dedicated to their causes who were also advocating for funding and sharing their experiences. Their dogged perseverance, shared personal stories, research, and the many times they have been to these rallies and meetings was, indeed, enlightening.  

My biggest take-away was that Turner Syndrome is not recognized or known by any of the researchers, activists, or legislators we had met at the rally. This was a startling realization of the work ahead of us. Indeed, we, as a Foundation, must bring the awareness and medical care needed to all, especially research, with our determination to make all those in DC aware of Turner Syndrome, I know we will do so.

These girls will suffer a lifetime of symptoms, but with proper help and awareness of this condition, they can look forward to a future we all take for granted.

Lois R

Grand Mother to Olivia (15), a young child with Turner Syndrome still fighting and trying to overcome related issues

Turner Syndrome Foundation Named Top-Rated Nonprofit

TURNER SYNDROME FOUNDATION NAMED “2017 TOP-RATED NONPROFIT” by GreatNonprofits

Award based on Outstanding Online Reviews

Turner Syndrome Foundation is proud to announce it has been named a “2017 Top-Rated Nonprofit” by GreatNonprofits, the leading provider of user reviews of charities and nonprofits.

Turner Syndrome Foundation provides support, education, and more to those affected by Turner Syndrome. TSF’s mission is to support research initiatives and facilitate education programs that increase professional awareness and enhance medical care of those affected by Turner syndrome. Early diagnosis and comprehensive treatments over the lifespan may lead to a brighter and healthier future for all young girls and women with Turner syndrome.

“We are honored to be named a 2017 Top-Rated Nonprofit, because it means you voted for us!” says Alexis Gratton, Program Development Coordinator. We are proud of our accomplishments this year, including launching our new seamless website, hosting numerous patient education workshops and a professional education conference, and welcoming spirited, dedicated individuals to our already amazing group of volunteers!

The Top-Rated Nonprofit Award is the based on the rating and number of reviews that TSF received from volunteers, donors and aid recipients. Here’s a sample of one of our wonderful reviews: “I reached out to the Turner Syndrome Foundation because I felt lost and alone. They have been a blessing to us! We’ve learned so much about the syndrome. We are now supported by a great community, have tons of information and resources to help our littlegirl, and to help others learn too – from friends, family, teachers, to doctors!  Thank you so much for being there for us!”

“Turner Syndrome Foundation is a great example of a nonprofit making a real difference in their community,” said Perla Ni, CEO of GreatNonprofits, “Their award is well-deserved recognition not only of their work, but the tremendous support they receive, as shown by the many outstanding reviews they have received from people who have direct experience working with Turner Syndrome Foundation.”

GreatNonprofits is the leading website where people share stories about their personal experiences on more than 1.2 million charities and nonprofits. The GreatNonprofits Top-Rated Awards are the only awards for nonprofits determined by those who have direct experience with the charities – as donors, volunteers and recipients of aid.

Read the inspiring stories about Turner Syndrome Foundation and add your own at https://greatnonprofits.org/org/turner-syndrome-foundation!

Together we make a difference!

Rally for Medical Research

Medical Research

Research is one of the four pillars of TSF’s mission. TSF recognizes that research is a team effort and, as a result, supports initiatives by referring families to participate in studies across the U.S. Scientists and physicians must have a comprehensive understanding of Turner Syndrome in order to lower diagnosis age and improve treatment options.

TSF partners with universities and medical centers to increase participation of research studies and develop new opportunities for TS research. These partners include Stanford Center for Interdisciplinary Brain Science Research, Nemours Children’s Hospital, the National Institutes of Health, University of Chapel Hill, Rush University, Arcadia University, Coriell Laboratories/NGIMS, JS Genetics Laboratories, and more.

TSF’s Research Initatives

Outside of these collaborations, TSF has also commissioned its own research initiatives. The first, the TSF Patient and Caregiver Registry, launched in 2009 to collect data on many aspects of TS, such as access to care, areas of concern, and more. In 2018, that registry expanded to include the Turner Syndrome Research eXchange (TSRX). TSRX is a collaboration with Invitae that collects de-identified patient information to help the global research community learn more about TS. TSRX participants can also see how their responses compare with others’, providing an immediate benefit to those affected by TS.

In addition, TSF has assembled committees of experienced medical professionals to address complex issues. These include the Council on Infertility (COI), which published guidelines on infertility and family planning, and the Transition Task Force in collaboration with the Hormone Health Network focused on a smooth transition from pediatric to adult care. Currently, the Council on Cardiology (COC) is working to improve cardiac care in TS patients.

Nuestro Estilo Car Club Supports TS

Support comes in many forms and many places. This page is dedicated to our wonderful volunteer Jennifer, whose eagerness and determination to be a voice for her daughter has resulted in increased awareness of TS in her community, and significant support to this cause. We are thankful to Neustro Estilo Car Club for supporting Turner Syndrome Foundation. A bake sale at a car show and a community enjoined for a day of reflection and support.

Jennifer found out she was pregnant with her daughter at 18, and during the pregnancy her baby was diagnosed with Turner Syndrome. Unfortunately doctors could only provide two options, either terminate the pregnancy, or allow the baby to pass away on its own. Jennifer chose to give it a chance, but unfortunately the little girl passed during labor.

After this traumatic experience Jennifer continued on, keeping her pain mostly to herself, before eventually having another little girl who has turned out perfectly healthy, and loves to hear about her big sister. Throughout this time, Jennifer also continuously researched Turner Syndrome wanting to know more about the condition, whether or not she could’ve done anything different to help her baby live, and to gain insight on what her daughter might have been like.

After several years, with her daughter as inspiration, and the support of family and friends, Jennifer decided she wanted to take action in the fight to bring awareness to Turner Syndrome by contacting the Turner Syndrome Foundation and hosting a very successful bake sale with the help of friends and family to raise money and awareness. Through her outreach, she received sponsorship from Nuestro Estilo Car Club, whom helped her host a successful event. She was pleasantly surprised that even though many people who came to the event had never heard of Turner Syndrome, they were more than happy to donate to the cause, and were able to sympathize with her, since some of them had lost a child even though it wasn’t necessarily related to Turner Syndrome. The fundraiser also helped her connect with a few others whose lives had been affected by Turner Syndrome.

Due to the event she has also become comfortable with sharing her and her daughter’s story, and explains that sharing it was probably her favorite part of the fundraising event. She is now very eager to help the TSF in bringing awareness to Turner Syndrome to give these girls a fighting chance, and show that they can lead healthy, fulfilling, normal lives.

On behalf of TSF, thank you Jennifer, Nuestro Estilo Car Club and all those who were part of this incredible community bake sale.  Your contribution has made a difference!   

A Girl on a Mission

Jenna is a twelve-year old student at St. Raymond Elementary, a parochial school, located in Bronx, NY. She is a high-spirited student that illuminates with a natural talent of song and theatrical presence representative of any Broadway bound starlet.

Jenna is an only child of Doreen. She carefully watched and asked for guidance when she saw a dip in her daughter’s growth. But for years there were no answers. Eventually, Jenna was referred to a new team of physicians and received a diagnosis of Turner Syndrome. The labored diagnosis concerned Doreen and she became stirred to increase awareness. As for the impact from TS on her daughter, it has not hindered her enthusiasm or joy for living.

This family received a scholarship to attend the 2014 holiday party to benefit the Turner Syndrome Foundation. There, Jenna had an opportunity to meet our founder and other girls just like her.  This first encounter resonated with Doreen, and she spoke with her employer, Center for Medicare and Medicaid Services to have Turner Syndrome information broadcast through an interview on PBS (Public Broadcasting Service) May 2015.
Watch the PBS Interview

Apparently, Jenna was tuned in! Now a student in seventh grade, Jenna wanted to raise awareness and support through a Treats and Sweets bake sale at her school. The request for a simple fundraising event soon became a full-fledged assembly program for faculty and students! The support of principal, Sr. Patricia Brito, and teacher, Mrs. Barbarite, were integral for Jenna to organize the event. The Turner Syndrome Foundation assisted Jenna by notifying individuals in the surrounding area about an opportunity to speak at the program. A number of women and girls attended and spoke at the assembly. A news reporter from Bronx 12 was there to film a segment that later aired on Optimum Network and was seen by thousands in NYC.

In conjunction with the school assembly, St. Raymond’s hosted a dress down day and the Treats for Sweets Bake Sale netting more than $3000 to benefit Turner Syndrome Foundation. It is a wonder to see such an outpouring of support for this young girl’s advocacy.

Jenna possesses a strong desire to create a greater understanding of Turner Syndrome. She courageously spoke openly about her diagnosis and brought other women and girls together in recognition and support for this cause.

We are so proud of you, Jenna!
Testimonies:
“Jenna was inspired by you (Laura Fasciano) and the Turner Syndrome Foundation.  You have lead the way in creating awareness of the syndrome in many communities.  We also applaud you in getting these other amazing women and girls to tell their story. Jenna was thrilled to meet her Turner Sisters, as she calls them!” –  Doreen R., mother

“It was a pleasure to be part of this event and I’m so happy to have met such wonderful people!! Jenna has a lot of great role models to look up to!!” – Ms. Barbarite, 7th grade teacher“The event was an absolute success. Thank you so much for helping us all connect and for always bringing awareness to Turner Syndrome! I can’t thank you enough for making this happen and allowing my daughter with Turner Syndrome and I to be a part of it. Today has been life changing for us. She left the event feeling so empowered after being able to meet with these wonderful girls and share similar stories. Not to mention having Jenna in her new school is a blessing.” Mayreni, A., mother

“The event was a success and everyone had a good time. If there is ever another event in NYC please let me know because I would like to speak more about TS.” Samantha D.

Be like Jenna. Be our partner in advocacy for TS!

Youth Contributors

Social consciousness of Turner Syndrome is evident through our solid base of youth activists. There are projects for many areas of interest from nonprofit management, social work, marketing, financial, and research. For more information about opportunities that are currently available, visit the TAKE ACTION webpage. https://turnersyndromefoundation.org/volunteer/

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