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"!
I learned about TSF through one of my professors and after reaching out was given the opportunity to intern here! Coming into this internship, I was nervous and unsure, as I had never had an experience like this before. Those feelings quickly morphed into passion and motivation after just a couple of days here. Being able to help individuals with Turner syndrome and their families has truly been an incredible experience. Interning at TSF has allowed me to apply my education and empathy in ways I could have only hoped for before this opportunity. I am coming out of here with not only more interpersonal and problem-solving skills, but an immense feeling of fulfillment and passion to continue my education and career in psychology. This internship has taught me so much and shown me just how important fields like this are. Nobody deserves to feel like they do not have anyone to turn to or support them, and it is extremely clear that TSF's mission is to combat that. This community is truly one of support, sisterhood, love, and beauty. I am so thankful for TSF for welcoming me and giving me a further sense of purpose. I have loved every second here and would recommend this position to anyone. Organizations like TSF genuinely make the world a much better place and I am so honored that I was able to be a part of that.
TS organization is the best. They go far beyond. I was diagnosed at 17. I'm now 63. Thanks to TS organization I'm still getting help. Please give to their foundation so their research can continue. Teresa
Turner syndrome foundation provides great tools and opportunities to connect with others with TS
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I am the proud mother of an 18-year-old daughter who was diagnosed with Turner syndrome while I was still pregnant. The Turner Syndrome Foundation has been an incredible source of support and guidance throughout our journey. From providing doctor recommendations to offering workshops, this organization has truly become like an extended family. Over the past 18 years, they have equipped me, my family, and especially my daughter to face each milestone and challenge with confidence. I will always be grateful to Laura and the entire team at the Turner Syndrome Foundation for the knowledge and support they have given us.
This organization provides an invaluable resource of knowledge and support for the community. After my granddaughter was diagnosed with TS, I have learned so much and met incredible people through their efforts. They are continuously making strides in raising awareness and are on the path to achieving great things for this community.
Wanted to thank everyone at Turner syndrome Foundation for helping raise awareness and increase knowledge about health concerns for girls and women with Turner Syndrome
I’ve been apart of the Turner Syndrome Foundation for the past 20+ years and I cannot wait to stay apart of it for the next 20+ years. Always meeting amazing people who are here to make a positive impact on the world. Such an amazing non-profit organization.
I have been involved with the Turner Syndrome Foundation since it's inception; at that time, my daughter had just been diagnosed with TS and there were no resources available to learn more about what she faced. Since then, the Turner Syndrome Foundation has educated medical professionals and educators and has provided support and a sense of community to those who live with TS. It has been an incredible journey, and with the advocacy of the Turner Syndrome Foundation, our life and the lives of others have been enriched and hopeful. I am grateful to the Turner Syndrome Foundation for its tireless efforts in providing the support and encouragement for those who are affected by TS.
I LOVE working with TSF! Laura has started a phenomenal organization with the mission to advocate and create awareness of TS. I was diagnosed at 12 with TS and spent decades not talking about my diagnosis. finding TSF and other Facebook pages has been a huge boost in being able to be involved, being able to meet and connect with others with the same condition, and to create awareness and to advocate for TS.
My name is Pam Parseghian. I am a 63 year old woman who was diagnosed with Turner Syndrome when I was in High School, but I didn't meet any else with TS until last summer at TSF's gathering. The experience of connecting with others inflicted with the syndrome was life changing. I felt less alone and understood. I also love sharing my experiences of overcoming challenges due to TS. In the foundation's monthly online meetups I learn how others from around the globe. TSF is a great organization working on making life better for me and my TS sister. I am most appreciative of all TSF's efforts and look forward to continued participation with the foundation.
Thank you TSF for the work you are doing and how you help all with Turners glad to be a volunter patient advocate .
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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
Turner Syndrome Foundation has been a great experience for me, over the time that I have volunteered, I have learned so much about this mission and this purpose for helping and empowering those with turner syndrome. I am very happy that I get to be part and contribute to this cause.
I volunteer for the Turner Syndrome Foundation, and it has been an incredible experience to get to work with other women with her nose syndrome, and learn so much about my condition, and the community that I am a part of. I am so very proud to be a part of the Turner Syndrome Foundation community.
I am a board member and volunteer for the Turner Syndrome Foundation and I am very impressed with the work that we get done with so few people on the team! We are a small organization that does big things and everyone who volunteers has a big heart and wants to make sure that TS females get the best all around care so that they can live their lives to the fullest of their abilities! I love working with the volunteers and other board members because you can see how much everyone cares about make TS females live their dreams!
I am currently interning with the Turner Syndrome Foundation, and it is an incredibly rewarding experience. This foundation plays a crucial role in improving the lives of countless girls and women affected by Turner syndrome.
One of the standout aspects of my time with the organization was witnessing the dedication, hard work, and unwavering passion of the director Laura Fasciano. Her commitment to the mission of the Turner Syndrome Foundation is truly inspiring.
It's clear that this foundation is making a meaningful difference in the lives of those it serves, and I am proud to play a part of such a impactful organization. I look forward to continuing to support and advocate for Turner syndrome awareness.
This organization is doing incredible work for the TS community. They are involved in almost every avenue from education, legislative advocacy, to patient support. Amazing what they have done as a small organization with mostly just volunteers. Given how many active and dedicated volunteers they have, you can tell their mission and programs are well supported!
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TSF does incredible work for the TS community. I'm honored to be a part of it. There is a way for everyone to get involved. They really empower people and help them advocate for themselves and others.
TurnerSyndromeFoundation 10/12/2022
We are glad that you are part of our team. Thank you for your kind review!
As someone whose life has been deeply touched by Turner Syndrome, I am compelled to share my heartfelt appreciation for the Turner Syndrome Foundation. This remarkable organization has played a pivotal role in supporting individuals like myself and their families, while tirelessly working to raise awareness and drive research for this rare condition.
From the moment I first reached out to the Turner Syndrome Foundation, I was met with an outpouring of compassion and understanding. The Turner Syndrome Foundation has demonstrated an exceptional ability to build a supportive community of individuals. The sense of belonging and understanding within this community is truly unparalleled..
I cannot express enough gratitude and admiration for the Turner Syndrome Foundation. Their unwavering commitment, compassion, and dedication to bettering the lives of those with Turner Syndrome have made an immeasurable impact on countless lives. They have not only raised awareness and driven research but have also created a warm and supportive community.
If you're seeking support, information, or simply wish to contribute to a cause that truly makes a difference, I wholeheartedly recommend getting involved with the Turner Syndrome Foundation. Together, we can work towards a brighter, more inclusive future for everyone impacted by Turner Syndrome.
I am a 23F with turner syndrome. Growing up, I always felt different than my peers. I was finally diagnosed at 17 years old!
The Turner Syndrome foundation held an event called "The X Factor Summer Bash." I met girls and women just like me! We shared experiences! I made friends! I have never known and loved myself better! This truly was life changing.
As a volunteer, I have been able to contribute to Turner Syndrome Foundation's mission in raising awareness by distributing material about TS. I have been involved in creating a flyer based on the WeLearn webinar on TS and diabetes (which can be found on the TSF website) and editing and formatting informational packets. After finishing my first year of medical school, I was looking for a summer opportunity in which I could not only help out the community, but also enrich my knowledge. Volunteering with TSF gave me a way to build upon what I had already learned about Turner Syndrome and allowed me to make a difference in the lives of others. While collaborating with Laura (director and founder of TSF) and medical professionals, I was able to further understand the significance of working in a team to achieve common goals. I know that I will carry what I have learned while volunteering with me in my career as a future doctor.
As a Client Services Coordinator at T urner Syndrome Foundation, I see the positive impact that TSF and its volunteers has on the TS community; not just here in the US, but in other countries too! Through their resources and advocacy work, many TS families are getting the help they need.
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I have the pleasure of working with great people at Turner Syndrome Foundation. It's obvious everyone is motivated to advocate for women and girls with TS; it's a team effort. It's inspirational to see Laura (founder of Turner Syndrome Foundaton) work day after day advocating for TS famlies. Turner Syndrome Foundation provides needed resources such as: medical guidelines, webinars, virtual meet-ups and workshops. From Prenetal care to adulthood and beyond, stay connected to Turner Syndrome Foundation. We are here for you!
TSF has allowed me to nit feel alone in this constant battle figuring out and understanding things that no one knew, that she was misdiagnosed before she was diagnosed at 6, it has helped me to read stories of older women that has succeeded in life, careers, health. I still don’t know how to help my daughter get in touch with girls her age who have this syndrome so she doesn’t feel inferior or “different”, I wish there was more opportunities to 11 year olds to learn about how much they can accomplish in life, and for me as a mom to know what is normal and what is not.
My name is Chioma and I am a volunteer for the Turner Syndrome Foundation. I volunteered in 2016 for TSF when I was in college and my experience was so enjoyable, that I decided to join TSF again, but this time as a volunteer as a blog writer! In my role, I write blog articles such as the "Importance of Newborn Screening" article linked below, which is posted on the website for educational purposes. I work alongside many hardworking individuals who are also passionate about helping young girls and women with Turner Syndrome and together they make this experience worthwhile. The resources on the website are very important because they bring more awareness to Turner Syndrome, which is a condition that is not often spoken about. One thing that I really appreciate about TSF is that it provides multiple opportunities for people to volunteer whether it is writing an article, hosting an event in your local community, or working together to create a fundraiser. I am forever grateful for my experience and look forward to continuing my work with TSF.
Article Link: https://turnersyndromefoundation.org/2022/09/28/turner-syndrome-and-the-importance-of-newborn-screening/#respond
TurnerSyndromeFoundation 10/12/2022
We value your skill and desire to impact lives! Thank you for all you do!
I have loved every aspect of my experience volunteering with the Turner Syndrome Foundation! Everyone is very supportive, understanding, passionate, and kind! The committee leads and volunteers are always thinking of new ways to spread awareness and contribute to the cause, and it's truly inspiring to be in such a creative and welcoming environment. Please consider contributing or volunteering for this wonderful foundation!
TurnerSyndromeFoundation 10/12/2022
Canon, you've been an inspiration to all of us in many ways. Thank you for being all that you are for TS awareness!
I really love everything this foundation stands for and everything they do. As someone who has TS, they have been so helpful in educating and spreading awareness.
TurnerSyndromeFoundation 10/12/2022
Hannah, It is a pleasure to support you and all women with TS. We are glad you find our work helpful.
The Turner Syndrome Foundation is an extraordinary organization. It is impressive what they've done with the funding they've had thus far and exciting to think of their expansion. Compelling education materials and social media. Their energy makes it easy to want to do more. Hope to be joined in supporting the Turner Syndrome Foundation as their effort is so important to me and my daughter.
TurnerSyndromeFoundation 10/12/2022
Thank you for your very kind review and support. Our best to you and your daughter!
TSF is an incredible community for all involved. There are so many ways to contribute and participate in this active and inclusive community! I hear many times that those with TS thought they were alone before finding TSF, but now they make connections and share stories. TSF is full service, from medical information and building provider networks to promoting community among its members.
TurnerSyndromeFoundation 10/12/2022
Yes, we are inclusive and we thank you for your acknowledgment! Growing this community is important to the mission. Thanks for the great review!
TSF provides awareness and advocacy for a condition that is not often spoken about. They are compassionate and provide an enormous amount of information to the public so that people with TS can easily learn what medical issues they should look out for, how to find a doctor, how to seek accommodations, etc. They are also incredibly active with legislation and are constantly working to pass more bills to expand the accommodations that we can receive and the general public awareness that we can receive.
TurnerSyndromeFoundation 10/12/2022
Your efforts and support for the mission is stellar! Thank you for caring about and supporting TS!
So happy to be a TSF volunteer - truly a great cause and team. This organization hosts so many invaluable free resources for those impacted and promotes its community while continuously advocating for them in the classroom, doctors and everywhere in-between.
If you are considering taking action as a volunteer or donating, I promise you TSF is a great organization to support.
TurnerSyndromeFoundation 10/12/2022
Pro bono experts, such as yourself, help TSF achieve what we otherwise could not afford. Thank you for your generosity in supporting this cause!
TSF is a great cause and I love volunteering. I’m learning about the latest research on this genetic condition as well as raising awareness in the community.
I can not begin to describe the phenomenal experience volunteering for Turner Syndrome Foundation (TSF) has been. The organization goes above and beyond advocating for females diagnosed with Turner syndrome and families impacted by the diagnosis. TSF is constantly developing new educational materials geared at every aspect of the community, from healthcare providers to college students, to increase awareness of Turner syndrome. TSF is a supportive and dedicated organization. I'm very grateful to be a volunteer and work with such a fantastic organization and community of individuals.
I have been volunteering for TSF as a blog editor for about a year and a half. Volunteering for this organization has meant so much to me. It has given me purpose, a community of other people with Turner Syndrome, and a way to give back. I appreciate Laura, Liz, and all of the other volunteers, who always make sure that we feel valued valued and important to the mission.
Susan
I work for TSF and I have learned so many skills that can apply to any job in the workforce:
-Organization
-Tenacity
-Flexibility
-Collaboration with staff, including senior staff and coworkers
-Professionalism
-Multitasking
-Content Planning, Development and Publishing
-Social Media Marketing
-And more
Additionally, the people at TSF have been so welcoming, fun to work with, have a great diversity of perspectives, and have helped me understand the Turner Syndrome community more than research on the internet can!
I highly recommend this organization to work for, if you have the chance!
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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!
I was the former social media coordinator for TSF and working here was an experience like no other. Laura Faciano has a genuine care for others and you can truly tell in her organization the Turner Syndrome Foundation. I highly reccomend this company to anyone.
As a volunteer with the TS foundation I have had the pleasure of working with a group of talented, creative, and dedicated individuals who are making an incredible difference in the TS community. As someone who has diagnosed with TS at a young age, I wanted to find somewhere that I could connect with other individuals who are affected by TS and also be involved in advocating for myself and the community. The TS foundation has far exceeded my expectations and I am grateful for the work they do.
My name is Shannon. I am an intern with TSF. Its funny before I went to colllege I had heard of Turner Syndrome, but I did not truly know what it was or what it meant. Since I have been working with them, whether in the office or on campus, I have learned so much. Not many people know about TS and I think it is time to change that. This foundation helps to educate individuals about TS, offers resources, and is a place where women can come together and share their stories. This foundation is taking big steps and I think it is time people start following.
A great community with hard-working and knowledgeable individuals. They strive to help those with Turner Syndrome, increase awareness, and promote treatment research.
I was diagnosed with Turners Syndrome at the age of 12. I had moments where it did impact me socially and academically. My mom worked very hard sending me to specialists at a young age. It was obvious that I was developing at a slower rate than my older sister and am the second child out of five siblings. I worked with speech, occupational and physical therapists. I even received a lot of academic support along the way. I was diagnosed with Non Verbal Learning Disorder at the age of 8. After high school and graduating from Cardinal Stritch University with an Associates Degree in Art and General Studies I still figured out what I wanted to do with my life. I was in an internship program called Project SEARCH helping young adults with disabilities find entry level jobs. At 30 years old I now work full time in the cafeteria doing dishes for Northwestern Hospital in Lake Forest Illinois. I am lucky to have the support of my family. My parents, younger brother and sisters have done everything to help me succeed. I am very lucky to have overcome such an obstacle.
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.
Turner Syndrome is not commonly known and this organization does such a great job to inform and advocate those with TS.
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"!
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!
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!
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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
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!
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!
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
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!
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.
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.
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!
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 =)
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.
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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.
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
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.
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.
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.
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.
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.
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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.
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!
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.
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!
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.
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
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!
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!
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!
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!
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!!!
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.