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Turner Syndrome Foundation

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Health

Mission: The goal of the Turner Syndrome Foundation (TSF) 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.

Results: TSF is recognized as a world leader for its contributions to a host of issues related to TSF programs. The greatest accomplishments of the organization to date would be the education and advocacy resources developed that reach thousands of physicians and allied health professionals, teachers, policy makers, patients and caregivers; especially the Council on Infertility organized to tackle reproductive health, which published “Fertility Preservation In Females With Turner Syndrome: A Comprehensive Review and Practical Guidelines."

Target demographics: Girls and women affected by Turner Syndrome

Geographic areas served: National

Programs: Turner Syndrome Foundation strives to increase the awareness of Turner Syndrome (TS) and highlight treatments available to those affected. The Foundation participates in major pediatric medicine, pediatric endocrinology, and disability conferences where information about Turner Syndrome is shared with general practitioners and specialists.

Turner Syndrome Foundation strives to educate not only individuals affected by Turner Syndrome about managing their health and living with TS, but also primary care physicians, educators, and the general public. The Foundation's education programs and workshops translate the practice of clinical science into useful and transformative information to benefit healthcare providers, educators, patients and their families.

The Turner Syndrome Foundation encourages further research and development by promoting awareness and education. The Foundation supports scientific research initiatives by advocating the need for increased scientific activity.

Community Stories

45 Stories from Volunteers, Donors & Supporters

3

Volunteer

Rating: 5

My name is Kathryn Caron and I am the mother of a 23 year old young lady named Brooke. Brooke was diagnosed with TS at the age of 10. Living in Maine and having a daughter diagnosed with TS has had its share of obstacles. Being a pretty rural state, we struggled to find any support, anywhere. As parents, we tried reaching out to other TS programs, however we were really aiming to find one close to home. The closest organization was located in New Jersey. I reached out to Laura (founder and president of TSF) who immediately (along with her staff) welcomed our family with open arms! Since 2011 or so, we have been building our relationship with the TSF! They have helped us gain awareness in Maine where we now have February recognized as Turner syndrome Awareness Month and now, my daughter Brooke and I are co-hosting a podcast called "Butterfly Pod-Talking Turner syndrome" where we are sharing stories of so many beautiful TS ladies both in Maine and now, stretching into New Hampshire! The TSF has been a HUGE support! We are beyond grateful to call them "Family"!

1 Sara A.3

Volunteer

Rating: 5

As a TS Patient, I've been longing for a community and resources to access the information and community I've been craving. TSF has given that to me 10-fold as I began joining their online forums, volunteer on their Awareness Committee and see the wonderful resources they are connecting their followers to.

2

Volunteer

Rating: 5

Turner Syndrome is not commonly known and this organization does such a great job to inform and advocate those with TS.

2

Volunteer

Rating: 5

My family was introduced to Turner Syndrome when my little sister, Amanda, was diagnosed with TS when she was 8. Over the last 12 years, I have watched my mother, Laura Fasciano, put her heart, soul, blood, sweat, and tears into creating an organization that aims to provide everything possible to those directly or indirectly affected by Turner Syndrome, both young and old.
TSF has fostered a welcoming and embracing community, continually delivers a greater collective of research, brings medical professionals together for collaboration, and provides its members with greater ease of access that research and data.
Witnessing the impact this organization has on others is awe-inspiring. As the old adage goes - "She believe she could, so she did"!

3 Susan M.15

General Member of the Public

Rating: 5

My daughter was diagnosed with Turners syndrome in Utero, and we have been exposed to a lot of misinformation about this genetic disorder from our first genetic counseling session, and from various providers who don't know enough about Turners to provide really good guidance when dealing with their medical care and individual situations.
The Turner Syndrome Foundation has been a tremendous support system for not only my daughter, but for parents of Turner girls. From a young age, my daughter met others similar to her at a camp for Turner girls and other social functions put together by the Foundation, and now that she is in her twenties, she tries to keep abreast with informative newsletters and monthly webinars which feature different topics that directly relate to her ongoing medical care. What a valuable resource for the Turner girls and their families! Bravo!

2 Lori K.2

Board Member

Rating: 5

Hi! My name is Lori Kobular and my daughter Julie was born with TS 33 years ago. When we first found out about TS we had never heard of it before. The information we read was very scary! The Turner Syndrome Foundation is a wonderful source of information for both families and doctors to learn more about Turner Syndrome. Without TSF I would not be able to meet other families with a TS daughter. When your child is not growing and developing according to the text books it is nice to be able to reach out to the Turner Syndrome Foundation and find out information that you didn't know! The Turner Syndrome Foundation works diligently to get the latest information on treatment for TS women and girls! The people who work there are a God send!

Previous Stories
6

Board Member

Rating: 5

When my daughter, Julie, was born with Turner Syndrome we had never heard of it before. We found that most of the doctors we took Julie to see had never seen a Turner Syndrome patient before and so they could not answer a lot of our questions about Turner Syndrome. That is where the Turner Syndrome Foundation has come into being a major asset to our family in answering medical, behavioral, intellectual and social questions. Without this organization families would be left in the dark and not understand that certain medical issues and behavioral issue are due to the missing X chromosome. For my family it was good to learn that we were not alone in our search for answers, and that TSF was able to tell us the connection to the missing X chromosome and to provide names of doctors who could help us find answers. TSF is a vital tool in helping us to understand and navigate through the TS issues.
Lori Kobular

3

Volunteer

Rating: 5

I've been working with Turner Syndrome Foundation as a volunteer and research collaborator since 2016. I am so grateful for their support of my research and their continued dedication to spreading awareness of and advocating for girls and women with Turner Syndrome. I've been lucky enough to witness their immense positive impact on the lives of individuals, families, and doctors. The Foundation consistently grows their resources to meet new medical advancements and the needs of those who turn to them for advice and support. They are a small but mighty nonprofit, driven by passionate individuals who happily give their time and money to a very worthy cause. Thank you TSF!

3

Volunteer

Rating: 5

For the past 5 months, I have worked for TSF as a Communications Intern, and I have been wowed by the organization's willingness to constantly improve the amount of FREE resources for the Turner Syndrome community in a variety of categories, such as opportunities to participate in research, how to take care of children who have Turner Syndrome, and how to overcome the various health challenges that Turner Syndrome often causes.

Furthermore, not only am I amazed at the organization's willingness to continue adding to and improving the foundation's rich diversity of resources, but I am also amazed at how they constantly assess the community's reactions to their new content and discover how they can do better next time, as well as their willingness to create content that is not only accessible to the TS community, but other communities. Their webinars are a great example of this, as they talk about wide-reaching topics like the how various occupational therapy exercises can positively impact your life (as well as how to do them), how to defend your child against bullying at school, especially if they have a disability, and what growth hormone therapy is, how it works, and how to have a higher probability of success when using it.

Finally, I have been astonished by TSF's staff, as everyone I have worked with have been so generous, hardworking, and willing to give me strong constructive criticism that helps me improve my work.

If you are thinking about working or volunteering for TSF, or if you are even on the fence on donating to their organization, I cannot stress this enough, go for it! You will NOT be disappointed!

3 Megan Edwards C.

Client Served

Rating: 5

As a woman with Turner Syndrome, I have greatly enjoyed engaging with the Turner Syndrome Foundation. They provide wonderful learning opportunities and activities for people impacted by Turner Syndrome- individuals who have Turner Syndrome, parents and family members who have a loved one with Turner Syndrome, and those interested in learning more, to name a few. The information provided is at an appropriate level, and helps provided needed support and encouragement. This includes helping people establish connections with others. I look forward to my continued involvement with the Turner Syndrome Foundation!

3

General Member of the Public

Rating: 5

My first contact with TSF was this year. I have TS and I have to say that they do a great job connecting patients around the world. As TS is a rara disease, it is essential to have an organization that gether women with the syndrome. Besides that, they sahre lots of information that are essential to raise awareness ando to promote a self care of the patients

5

Volunteer

Rating: 5

Volunteering with the Turner Syndrome Foundation has showed me how important and wonderful these women and girls are. The Turner Syndrome Foundation works day in and day out to get the best resources for these girls so that they can live a healthier life! I love this foundation!

3 Laura F.7

Board Member

Rating: 5

The people whom I’ve met over the past 10 years are united in raising awareness of Turner Syndrome. They are dedicated to creating a better understanding of the disorder and saving lives. Women, and families such as mine, benefit knowing that there are advocates dedicated to impacting lives. It’s a duty and honor to support this cause.

4

General Member of the Public

Rating: 5

Always happy to support TSF!

4

General Member of the Public

Rating: 5

TSF creates multi-faceted programs that fill the needs of women and girls with TS. Anything you need is available on the TSF website free of charge.

3

Volunteer

Rating: 5

I volunteer as a Facebook page moderator for TSF and I love it! It’s such a great way to share and create awareness about Turner Syndrome and the community is amazing!

6 AnotherMom

Board Member

Rating: 5

I have been involved with TSF and been a donor for several years. It is amazing what we can do with great volunteers and hard earned funding. The ED has great ideas to help women and families dealing with TS. Unfortunately, we have to choose which ones we can fund! I wish TSF could attract the type of funding and attention that the big charities get. Imagine the things we could do =)

5

Board Member

Rating: 5

I became involved with Turner Syndrome Foundation when I was involved with many young ladies in a pediatric endocrinology clinic. I was so impressed, as a nurse, that TSF offers education, at no charge, for patients, parents, educators, and health care providers. There is so much information available on the web site to support the families of these ladies, young or aging.
There is also support regarding ways to maneuver the health insurance challenges. Questions about the actual genetic syndrome can be answered by medical providers, social workers, and those who have or are experiencing TS. There are opportunities to participate in research and to see what the latest findings are in sub specialities that treat the various aspects of TS. There are always ideas to address in the future being formulated.
The early diagnosis of TS was the initial goal when TS was founded. Now the information available covers the life span of the individual as well as so much support for ladies and their families.

Previous Stories
5

Board Member

Rating: 5

This organization provides education and support for health care providers, educators, parents and patients with Turner Syndrome. The education is updated and available to all online. TSF does not charge dues to participants. Answers to questions can be obtained from healthcare professionals. This organization has done so much for this clientele over the years and has recently added the opportunity to participate in a data base which would help improve care and early diagnosis.

5

Volunteer

Rating: 5

Great organization!

5 Jean M.1

General Member of the Public

Rating: 5

i Must admit out of any other educational sights on TS the foundation I find it personally the best Theirs always a person on the other end trying too help youin anyway they can ,and it’s very much appreciated. I’d definitely recommend the foundation if you need any form of help. Thank you all the way from Bonnie Scotland

3 forjudmarie

Client Served

Rating: 5

My daughter has Turner's Syndrome. She was diagnosed at 18. She had all the health conditions associated with Turner's as well as both physical/anatomical characteristics, and delayed learning disabilities . She continues to maintain her health.

4

Volunteer

Rating: 5

My name is Sarah. I was diagnosed before birth with Turner Syndrome, and have always strived to not only be the best advocate for myself, but also for other girls, and women affected by TS. A couple years ago I was looking to get more involved with the TS community, and I couldn't be happier or more grateful that I came across the Turner Syndrome Foundation. From the start I have felt apart of such a loving, caring community, I am in awe of all the hard work everyone involved with the foundation contributes in terms of advocacy, raising awareness, research initiatives, and making sure that every girl and woman affected by TS has the best quality of life possible. I have had the opportunity to organize a couple fundraising campaigns, participated in the NJ marathon a couple years ago as a member of team TSF, and most recently attended the retreat weekend the foundation recently hosted. I am looking forward to experiencing my first workshop. The foundation does so much to improve the lives of every girl, and woman affected by TS and I couldn't be more honored to be a small part of it all. I am looking forward to getting even more involved in the near future.

4

Volunteer

Rating: 5

I've volunteered at at least 5 TSF events, and each one is better than the last. There is a real focus on community, which is something special I think other organizations are lacking. I will continue to support TSF because I've seen firsthand the impact they have on women and girls with TS.

3

Volunteer

Rating: 5

Great place to volunteer. Laura Fasciano, the founder, works with your schedule and interest. She truly cares about the cause. The staff and volunteers work hard to support the organization’s mission of raising awareness, providing access to resources, support and community to those affected by Turner Syndrome.

4

Board Member

Rating: 5

Turner Syndrome Foundation helps improve lives every day with their commitment to a increased awareness through education and research initiatives. The Turner Syndrome Research eXchange is to their credit as is the access to information and support available to professionals and consumers. There are no membership dues for patients. The objective, give everyone a chance to attain good health and educational outcomes. This is a solid charity with a large active volunteer base. TSF will continue to flourish with thoughtful leadership and innovative progress.

Previous Stories
6

Board Member

Rating: 5

More than awareness to reduce the age of diagnosis, TSF provides free access to education resources & support

4

Board Member

Rating: 5

My daughter has Turner Syndrome and we have been part of this organization since its inception. While Olivia has challenges (and who doesn't ) Turner syndrome makes her /them even more special. I can't say enough positive things about Laura and all of the board members who work tirelessly to help educate and advocate for TS. The statistics 1/2000 females have TS and 98% abort spontaneously prove that there should be more awareness out there. Please help is advocate.

4

Volunteer

Rating: 5

TSF offers tons of resources and support to patients and professionals completely free of charge!

3

Volunteer

Rating: 5

I volunteered at handful of TSF events and was wow-ed by all the volunteers who came together for this cause! I'll be participating in the NJ Marathon again this year to support such a great charity!

4

Volunteer

Rating: 5

I am a volunteer with the Turner Syndrome Foundation. I found out about Turner Syndrome through a genetics class that I am currently taking. On researching TS, I found that knowledge about this disorder is severely lacking, and wanted to help spread awareness and a sense of community. I found the Turner Syndrome Foundation and was amazed that an organization dedicated to awareness, support, and research was entirely run by one woman, Laura Fasciano. Every week I see the time, love, and work that Laura and the volunteers here put into helping individuals with Turner Syndrome. I'm very lucky to be involved in such a place and see the work that they do.

6

Client Served

Rating: 5

Before her birth, our granddaughter, Ava, was diagnosed with Turner Syndrome. No one in our family had ever heard of Turner Syndrome and we were not able to obtain any helpful information. In 2011, when Ava was 4, our daughter found the Turner Syndrome Foundation on line and immediately connected with someone in the organization. A few months later 16 of our family members attended the TSF Family Day at the New Jersey Marathon. We were so excited to meet other TS families and, for the first time, to be given valid and encouraging information about TS! We no longer felt that we were the "only" family going through this.

The Turner Syndrome Foundation was started by one woman, Laura Fasciano, a mom whose own daughter had TS. Not being able to find any helpful information, she set out on a mission to learn all she could about TS. Since that day, she has accomplished more than any one person could imagine. She has championed the Turner Syndrome Foundation into an amazing organization supporting families' concerns, creating a community of TSF families, and bringing awareness to pediatricians and other pediatric specialists, medical students and legislators. Laura and TSF have brought hope and help to so many families! Our family is incredibly grateful!

6

General Member of the Public

Rating: 4

When I was younger, my late mother was trying to find out more about this group.She first discovered this article through the renowned "Dear Abby". I joined a local group, and met many sweet young ladies ,known as true "Sisters". I enjoy keeping contact online.

5

General Member of the Public

Rating: 5

We would like to share our family Christmas tradition that is bitter sweet. Every year on December 9th we search for a special Christmas ornament to remember Hannah Grace Brooks. December 9th, 2004 she died due to a heart defect related to Turner Syndrome. Hannah Grace was due to be born in early 2005. In early October of 2004, a routine sonogram showed that fluid was building up and putting pressure on her heart. This condition was steadily increasing and making it more and more difficult for the heart to do its work as she grew. Doctors proposed a very risky surgery in which fluid could be relieved in-utero, but could also cause Hannah to lose her life. The risk was such that specialists at Harvard University were petitioned to perform it and they promptly refused to operate due to the danger. After much prayer, as her parents we decided that we would put the outcome in God's hands and not try force things ourselves. To this day, we trust that He is sovereign. The day of the final sonogram, we both knew in an instant that our lives were changed forever. No heart beat was detected. Our precious little girl was finally and completely in God's presence. As a parent, you just never expect to attend the funeral of one of your children. We named her Hannah after the story in the Bible where Hannah prayed for a child and He honored her with Samuel. Just as He did with Hannah in the Bible, God blessed our lives with this child, if only for a moment.
So we choose to give each year at this time in honor of our sweet child Hannah and in honor of all of those lives who are touched by Turner Syndrome.
Three years ago, our oldest daughter was challenged to do a community service project through her Honor Society mentor. Hadley decided to make Christmas ornaments and sell them where all proceeds were donated to the Turner Syndrome Foundation. We altered our family tradition and this is the third year we are making ornaments for Turner Syndrome research. All three of her sisters are now involved in making these ornaments each year.
Some facts about Turner Syndrome:
' It affects about 1 in 2,000 female births.
' It is also known as the XO syndrome because one of the X chromosomes never crosses over. Effects are varied, depending on the amount of genetic material missing.?
' These females are short in stature and do not develop secondary sexual characteristics resulting in infertility.
' Perhaps one of the most alarming statistics is that Turner Syndrome is attributed to 15% of all miscarriages and stillbirths.
While there may be tears in our eyes because of our loss, education and research can help those affected live better. The ornaments include a butterfly which is the symbol for Turner Syndrome and a cross to remember Jesus and the life He gave so that we have eternal life and that our separation is only temporary. This will continue to be an annual tradition. Making this donation in Hannah's memory has helped our family heal from her loss.

Review from #MyGivingStory

5

General Member of the Public

Rating: 5

this is my story Help me to spread the word about Turner Syndrome

My name is Kym Hall and I was diagnosed with Turner's Syndrome at 16 YEARS old.. I was born the youngest of six with my twin brother in 1971. I showed some signs growing up of Turner Syndrome but doctors never put it together till 16 . I was always the shortest in my class had the webbed neck and hearing problems. At 16 my mom was concerned about my growth and puberty so off to the doctors we went then did a DNA test which confirmed Turner Syndrome. It was scary at first not understanding Turner Syndrome and being a teen but I learned quickly not to let it stop me. Meeting others with Turner Syndrome helped me as well. I went to college got my BA and Masters in counseling.

I am currently a retired teacher and a volunteer advocate for the Turners Foundation Syndrome in my home state of New Jersey. We were instrumental in helping getting a bill passed that makes February Turner Syndrome Awareness month in New Jersey. I phoned emailed and even t t testified infront of the nj senate . I currently volunteer by talking with others about turner syndrome for The Turner Syndrome Foundation. It is rewarding and helpful.to help others

I want every Turner Syndrome baby to have the advantages I didn't have due to my late diagnosis. I have a passion for awareness and hope to allow more girls a much earlier detection.

Look up Turner Syndrome Founation at turnersyndromefoyndation.org or on YouTube search kym turner syndrome diaries for more info on my story at: https://www.youtube.com/watch?v=rb8mgXt2PPs

Review from #MyGivingStory

5

Volunteer

Rating: 5

A committed a organization whose mission is taken seriously. They truly care about the cause they are arduously working for. Every call, every email, every personal visit is attended to as though it is coming from a family member. They go far and beyond to provide individuals with the necessary resources that will meet their needs. I’ve been a witness of their relentless and selfless work when it comes to finding answers and developing resources that will lead to a better quality of life to the women they are serving, and for them I am very thankful. TSF you rock!

5

Client Served

Rating: 5

I called TSF looking for information and was so pleased with the response! I could tell TSF was genuinely happy to answer my questions. Happy to know TSF has got my back when I need them!

5

Volunteer

Rating: 5

I've attended a handful of TSF events, and I always leave impressed! The amount of support from the community is great! And it's clear that everyone, especially children, always have a ton of fun! I'm so happy to be a part of and support this community!

5

Volunteer

Rating: 5

I volunteered at the NJ Marathon with my daughter. It was a great experience! So many people came out to support TSF, the energy was amazing!

5

Client Served

Rating: 5

My daughter was diagnosed with Turner Syndrome when she was 4 years old, she is 10 now. 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 little girl, and to help others learn too - from friends, family, teachers, to doctors!
Thank you so much for being there for us!!!

5

Donor

Rating: 5

We received a personalized and grateful card after a donation we made.

6

General Member of the Public

Rating: 5

My granddaughter was recently diagnosed with Turner's Syndrome. I signed up with this non-profit organization because I want to be up to date with the most current research and medical breakthrough for my precious Sydney. My son is in denial. I wish there was a support group here in the southern California area. I was so thankful for the kind information that I have been given from this wonderful organization. My granddaughter had met her specialist at Children's Hospital at Orange County. Thank you again.

4

Volunteer

Rating: 5

Advocating for patients and families, workshops, patient outreach, research. Great Foundation. They personally care about patients.

4

Volunteer

Rating: 5

Advocating for patients, creating activities, education, raising awareness, and research

4

Volunteer

Rating: 5

Advocating for patients, creating workshops that are free access for education and research