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Turner Syndrome Foundation 2021 Annual Report

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As we pause to reflect on our 2021 Annual Report, the Turner Syndrome Foundation (TSF) hopes for peace, safety, and joy in the new year. As part of our mission, we encourage others to ask for the help they need, advocate for themselves, and make a difference for individuals with Turner Syndrome (TS). With this goal in mind, we feel that our mission has gained momentum and helped the TS community raise its voice and strengthen its resolve to live full, healthy, and purposeful lives.

This post highlights TSF’s brightest achievements during this past year, as well as our hopes for what the organization will achieve in 2022.

“Unexpected kindness is the most powerful, least costly, and most underrated agent of human change.”

Bob Kerrey, former Governor of Nebraska and U.S. Senator

Voices That Inspire Change

“My youngest daughter was recently diagnosed with TS at 12 years of age, despite showing signs of the condition since birth. I wish our pediatrician or cardiologist had diagnosed her sooner.” – Lynsay, Texas

“My daughter was diagnosed with TS in utero. We were urged to abort and told she would never make it to birth–and if she did, she would lead a miserable life full of complications. I didn’t listen and now have a thriving six-year-old. We have been fortunate to have an endocrinologist knowledgeable about TS. However, no other medical professional we have seen has ever heard of the condition.” – Misty, Ohio

“I am a patient with TS and went my entire childhood intuitively knowing that I was different, but without any answers from medical professionals. Women and girls with TS deserve better than that. With greater education and support in the healthcare system, invaluable interventions and treatments will be made more accessible for people like me.” – Maryann, California

I have struggled for a year to get my daughter finally approved for affordable access to growth hormone so she can grow to be on the growth chart. I have been surprised by medical professionals who don’t know what TS is!” – Christa, North Carolina

“I am a TS patient and now work in health care as a Physician’s Assistant. I support [TSF’s Petition for Patient Care] because of my experiences as both a patient and a health care provider. I’m 26 years old, and it’s taken a lot of research and many years to get the care that I need. My hope is to make it easier for girls with TS to get the high-quality care they need and deserve.” – Kayla, Pennsylvania

“As a woman with TS, I have felt isolated. I have experienced the infancy of knowledge about my condition–both the emotional as well as the physical. Insurance companies need to be made aware of this. I just had to pay for a bone scan that should have been covered. This is only one example. Many women have emotional needs that insurance will not cover. We need this help. Thank you.” – Wendy, Pennsylvania

“My daughter has TS and has benefitted so much from the care and assistance she has received. This should be expanded & provided to all girls with TS.” – Deborah, Minnesota

“I am a pediatric neurologist, and this cause is extremely important to me. In addition, a close friend’s daughter has this condition, and I want her to be able to achieve her potential and have every opportunity.” – Jessica, Colorado

“Both of my twin nieces have TS, and I feel like there should be more information and more awareness of this disease. We just have to take it day by day on what this disease can affect in their bodies, with no answers in sight. I would love to see more research on this disease so we can learn more about it and expect more of what’s to come.” – Stephanie, Tennessee

“My nine-year-old daughter had a confirmed diagnosis at birth after my challenging fraternal twin pregnancy (fetal hydrops/cystic hygroma). I’m fortunate to have a healthcare background, but navigating the system to advocate for my daughter has still been a challenge. Educating primary care doctors and health insurers, as well as regulating prescription medication costs, are important first steps to improve access for our girls.” – Christina, Maryland

“As someone who was just recently diagnosed at age 29, I was shocked at the lack of knowledge regarding TS from numerous providers and the lack of available resources. We should not be forced into making major medical decisions based off of what our health insurance does/does not cover. It is critical that we receive funding to expand our knowledge base and provide all-encompassing medical treatment.” – Sara, New Jersey

“My daughter was diagnosed late, at 15, because she does not have many of the outward symptoms of TS. She is 5’8″ tall. Since she was 12 years old, we kept asking for them to look into why she wasn’t getting her period, and they kept saying to wait until she turned 15. I should have pushed harder. I knew something wasn’t right. If any of her doctors had done more testing, we could have found this out sooner. She is so upset because her body is not changing outwardly like her peers. If she had been diagnosed sooner, we could have started treatment sooner. She has only been on the hormones for six months, but there is no change. I’m frustrated with how little people know about mosaic TS.” – Patti, Wisconsin

“I am a mom to 13-year-old butterfly, diagnosed with TS since birth. My daughter unfortunately has multiple health complications due to TS. I have been a proud advocate, for TS in the state of Pennsylvania for the past nine years, working with state and local legislatures to proclaim February as TS Awareness Month. During the month, information is shared on the Senate floor at the State Capitol, expressing that more funding and awareness is needed for TS.” – Dana, Pennsylvania

I was not diagnosed until age 26. I am the mosaic type and have diabetes, and my hearing loss is in the profound category. Hearing aids are expensive, and we need help with other medical problems. Even if we have good insurance, deductibles are still very high, and [my insurance] does not cover hearing aids.” – Michelle, California

“My daughter has TS, and we have found that there is almost no awareness among the general public. We would like this to be more widely known and recognized!” – Kristen, Missouri

“I was diagnosed when I was 11 and am living a beautiful life as a butterfly! I’m now 35 and have a loving husband and successful career. Dreams do come true, and you’re stronger than you think. I wouldn’t be where I am now without the insurance coverage and medical care I received and continue to receive. We need to do all we can to help others understand and provide care for women and girls with TS.” – Lauren, California

Program Outreach & Impact

Throughout 2021, TSF made great strides to help the TS community, including:

Contacts served:
Families – 35%
Patients – 15%
Medical professionals – 20%
Agencies & organizations – 10%
Supporters – 20%

Acknowledgement of Our Teams

staff

“My late husband, Gary, was a founding board trustee of TSF. Over the years, I actively volunteered by his side and have since filled his position as trustee upon his passing. We believe these TS females are so incredibly special. Gary would be very proud of all that the Foundation has accomplished.” – Doreen Sullivan, Board Trustee

All of these achievements could not have been realized without the help of our team of staff and key volunteers, including:

Thank you for all of the great work you have done for our mission. We look forward to seeing the accomplishments we will make together throughout 2022!

TSF sends our heartfelt gratitude to our entire community as we approach another year’s end. We give thanks to all families that allow us into their lives through shared laughter and some sorrows. We’ve had overwhelmingly great feedback on our WE Learn webinars and look forward to another year of engaging topics. We would like our TS community to reach out to us with topics of interest for our WE Learn webinars. If you have knowledge of a TS physician or center in your area and would like to share that information with the rest of the TS community, we’d appreciate your input.

TSF also thanks you for your kind words of recognition on GreatNon-Profits.com.

“TSF is honored to continue our excellent work through advocacy and support. With your continued support and generous donations, we can provide many free services throughout the upcoming year.” – Janis Elwell, Board Trustee

Thank You to Our Supporters

Additionally, TSF would like to thank the supporters who helped promote our mission this year, including:

  • medical professionals who have helped grow our professional membership program and spread TS awareness;
  • advocates for the TS community who have amplified our voices;
  • researchers who developed a greater understanding of TS and how to help individuals with the condition overcome their challenges;
  • educational-professionals who helped students with TS foster the ability to manage their academic challenges;
  • caretakers and families who stood up for their loved ones with TS and promoted TS awareness; and
  • our individual and corporate donors who funded our mission.

Thank you for choosing to support the TS community and positively impact the lives of thousands of people affected by TS. We couldn’t have done it without you!

Goals for 2022

As we look towards 2022, here are some of the resolutions TSF hopes to accomplish over the next year: 

  • growing our professional membership network,
  • expanding our outreach to the TS community and their supporters by creating new resources,
  • developing relationships with the professional medical community and others who will help spread awareness of rare genetic conditions,
  • increasing awareness of the TS community during TS Awareness Month and beyond,
  • garnering support for the TS community from government officials through legislative advocacy, and
  • encouraging new TS research and advancements in TS care.

How can you get involved? Give back, refresh your resume, and be social! Volunteer with the Turner Syndrome Foundation. If you cannot invest your time, consider investing your money to bring change and hope to so many.

Takeaways

While 2021 has certainly had its challenges, it has been a productive year for TSF. Thanks to our staff and supporters like you, we have made huge strides to help the TS community in many ways. 

Whether you learned about TS due to a diagnosis, an opportunity to gain job experience, a blog article, or other means, just know that you’re not alone in your quest to make a difference. Whatever impact you have made, we appreciate you for making it this far. Generosity is the act of caring in a way that is meaningful to you. Giving of your time and talent is committing yourself to the cause. Donating money is charitable beyond measure. Thank you all for making an impact in lives of baby girls and the butterflies they become. Together, through great generosity, we change lives.

We hope you will continue your journey with us during 2022 and beyond. Happy New Year!

Written by Laura Fasciano, TSF founder, and Elizabeth Rivera, Blog Content Coordinator.  Edited by Susan Herman, TSF volunteer lead blog editor.

 © Turner Syndrome Foundation, 2021

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