There are so many reasons individuals choose to give to the Turner Syndrome Foundation, but at the heart of it, it always comes back to the same truth:
No one living with Turner syndrome should ever feel invisible, unheard, or alone.
Yet for so many girls, women, and families affected by Turner syndrome (TS), that is exactly what life feels like, especially in the early days of diagnosis, or worse, in the years before answers ever come.
When Awareness Is Missing, Families Pay the Price
For Sam, living with TS meant years of unanswered questions and deep frustration.
“Because it’s so rare, so many people don’t know what it is, it’s SO SO frustrating. You have so many questions and personally, I felt like no one could answer them. A lot of times I turned to the internet and found nothing. That’s why I think it’s important to raise awareness.”
Sam’s story is not uncommon. Too many people with TS find themselves explaining their condition to doctors, educators, and friends because awareness simply isn’t there.
And when awareness is missing, care suffers.
When Awareness Is There, Everything Changes
Carly was just six years old when her primary care provider noticed something subtle but important, an unusual dip in her growth chart. That moment of awareness led to a referral, genetic testing, and ultimately, a Turner syndrome diagnosis.
But as Carly’s mom Kayla shares, diagnosis is only the beginning.
Carly has already faced countless appointments, tests, and specialists. Her care isn’t “by the book,” and Kayla has had to learn, research, and advocate constantly, even educating providers along the way.
They are fortunate to live near a Turner Syndrome Clinic, and even so, accessing care has been a challenge. Many families aren’t even lucky enough to find a doctor who is well-versed in Turner syndrome.
This is why educating medical professionals is so critical, and why TSF’s work matters so deeply to patients and their families.
Community Turns Fear Into Hope
Sometimes, awareness arrives at exactly the right moment.
Tina, a grandmother, shared what it felt like to learn her two-month-old granddaughter might have Turner syndrome. Overwhelmed and scared, she searched the internet, which only ignited more fear.
Then she found TSF.
“Reading your description had tears running down my face knowing she can live a normal life. Thank you for the ray of sunshine you poured over my heavy heart.”
That is the power of community.
That is the power of accessible, trustworthy information.
That is the power of showing up and showing these families we care.
What the 1938 Collective Makes Possible
The 1938 Collective is TSF’s monthly giving community, named for the year Turner syndrome was first documented. It brings together individuals with TS, families, medical professionals, and allies who hold one core belief:
A missing chromosome shouldn’t mean missed opportunities.
Because of monthly supporters, TSF can provide:
- A library of 50+ free educational webinars (and counting) on health, mental health, fertility, life skills, and more
- Star Sisters, a monthly online support group where girls and women with TS find connection and understanding
- A regularly updated blog sharing personal stories, research insights, and practical guidance
- Ongoing medical education so providers can offer informed, compassionate care
- Global awareness efforts reaching millions and helping families find answers sooner
Monthly giving allows TSF to plan, grow, and show up for these families every single day.
Join the Movement
Some give because they have experienced firsthand what happens when families don’t have answers.
Some give because girls like Carly deserve doctors who already understand their condition.
Some give because women like Sam shouldn’t have to explain themselves over and over again.
Some give because no caregiver should feel overwhelmed and alone while waiting for answers.
We all give because we hold the core belief that we have the power to change lives with Turner syndrome.
If you’re reading this and wondering how you can make a difference, we invite you to join the 1938 Collective.
Whether you give $19.38 a month to honor the year TS was discovered, or choose another level that’s meaningful to you, your support helps ensure that every person with Turner syndrome feels seen, supported, and hopeful.
Together, we can create a future with fewer questions and more answers.
THE 1938 COLLECTIVE IS MORE THAN A GIVING PROGRAM — IT’S A CIRCLE OF BELIEVERS STANDING FOR TURNER SYNDROME. YOUR GIFT OF ANY AMOUNT ENSURES THAT WE CAN CONTINUE TO HELP ALL PEOPLE.
JOIN US IN CHANGING LIVES EVERY SINGLE MONTH.
BECOME A MONTHLY MEMBER
Designed by Gerely Caba.
© Turner Syndrome Foundation, 2025
