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Greetings!

There is so much happening across the TSSUS community, and this issue of TSSUS Connect is filled with reasons to feel inspired, encouraged, and excited about what’s ahead!

From heading back to school and finding new ways to tackle executive functioning challenges, to celebrating the accomplishments of our 2026 scholarship recipients, this issue is all about possibility.

We’re celebrating the many different paths our community members are taking and the incredible things they are accomplishing along the way.

You’ll also find practical resources to help make life a little easier - from information about affordable hearing aid options to TSSUS grants that can help make education, adoption, and life-enriching opportunities more accessible. We believe that support should meet people wherever they are in life, and that sometimes, the right resource at the right moment can make all the difference.

We’re especially excited to celebrate the upcoming 10th anniversary of the TSSUS Butterfly Society! Nearly $900,000 has been contributed by our dedicated monthly donors over the years, helping TSSUS provide education, research, advocacy, resources, and connection to people and families touched by TS. That is an extraordinary example of what happens when a community comes together with purpose.

And, of course, you’ll meet another incredible member of our community in My TS Story. Kelli Gardella reminds us that our stories can take unexpected turns, and that sometimes the experiences that challenge us most can help us discover strengths we didn't know we had.

As you read through this issue, I hope you find something that makes you smile, something that helps you, something that inspires you, and perhaps something that reminds you that you are never alone.

Thank you for being part of the TSSUS family. Together, we are building a stronger, more informed, more connected Turner syndrome community, and there is so much more ahead!

With gratitude and butterfly hugs,

Becky Brown

National Director of Development & Communications

Here are 15 practical, student-friendly tips and tricks for managing executive functioning challenges. These work well for middle school, high school, and college students and can be adapted to individual needs.

15 Tips & Tricks for Executive Functioning

• Break Big Assignments into Tiny Steps - “Write the research paper” can feel overwhelming. Turn it into smaller steps: choose a topic → find three sources → make an outline → write the introduction → write one section at a time.

• Use One Master To-Do List - Keep assignments, activities, appointments, and personal tasks in one place. A paper planner, phone app, or digital calendar can work. Avoid keeping information in five different places.

• Try the “Next Step” Rule - When you're stuck, don't ask, “How am I going to finish this?” Ask, “What is the next thing I need to do?” Starting is often easier when the task feels small.

• Set Alarms for More Than Just Classes - Use reminders for starting homework, leaving for appointments, taking materials to class, and beginning bedtime routines - not just for events you can't miss.

• Give Yourself a Visual Schedule - Seeing the day laid out can make time easier to understand. Use colors, symbols, checkboxes, or pictures to show what happens next.

• Estimate Time, Then Double It - Students with executive functioning challenges may underestimate how long tasks will take. Try estimating the time and then adding extra time for distractions, transitions, and getting started.

• Use a Timer to Make Time Visible - Try working for 15–25 minutes, then taking a short break. A timer can make an intimidating assignment feel more manageable.

• Create a “Launch Pad” for School Stuff - Keep your backpack, laptop, charger, keys, sports equipment, and other frequently needed items in one designated location. Make it easy to grab everything when you leave.

• Pack Your Bag the Night Before - Before going to bed, check your schedule and pack what you'll need for the next day. In the morning, you will be very grateful!

• Use the “Two-Minute Start” - Tell yourself you only have to work on the assignment for two minutes. Open the document, write the first sentence, or solve the first problem. Getting started is often the hardest part.

• Make Distractions Harder to Reach - Put your phone across the room, silence notifications, close unnecessary browser tabs, or use website blockers while studying. Don't rely entirely on willpower.

• Keep a “Forgotten Things” Checklist - Create a short checklist for leaving home or school: Phone • Laptop • Charger • Backpack • Homework • Water • Keys. Keep it by the door.

• Use Body Doubling - Work near someone else who is also working, even if you're doing different things. A study partner, friend, parent, tutor, or virtual study group can provide helpful structure and accountability.

• Build in Recovery Time - Executive functioning takes energy. Schedule breaks, food, movement, sleep, and downtime. Being exhausted can make planning, focusing, remembering, and regulating emotions much harder.

• Ask for the Support You Need - Needing strategies or accommodations isn't a sign that you're not capable. Talk with teachers, counselors, disability services, or parents about supports that can help you show what you know. Consider accommodations like written instructions, extended time, organizational check-ins, or breaking assignments into smaller parts.

A Simple Rule to Remember

Make it visible. Make it smaller. Make it easier to start.

Executive functioning challenges aren't about being lazy or not caring.

Sometimes the brain needs external structure to do what another brain can organize internally. The goal isn't perfection; it's finding tools that make school and daily life more manageable.

Congratulations to Our 2026 TSSUS Scholarship Recipients!

The Turner Syndrome Society of the United States is proud to announce that nine outstanding members have received college scholarships this year. This year's awardees hail from nine different states across the country, reflecting the strength and reach of our nationwide community - and they're pursuing an incredibly diverse range of career paths, including athletic training, physician assistant studies, music education, American Sign Language, and more.

These young women embody the spirit of resilience, ambition, and determination that defines so many in our community. Whether they're headed toward careers in healthcare, education, the arts, or beyond, each of them is a reminder that a TS diagnosis is never a limit on what someone can achieve. We're honored to help support their educational journeys, and we can't wait to see what they accomplish next.

If you or your child will soon be taking college or technical courses, encourage them to apply for next year's scholarship through their TSSUS account.

In 2025, TSSUS launched our Adoption Assistance Grant initiative. TSSUS awards up to $2,000 in direct financial assistance to families once their home study is complete. Applications are accepted throughout the year.

Thus far, TSSUS has awarded two adoption assistance grants since the program began, and we welcome those who are eligible to apply by signing into your TSSUS account.

Additional Adoption Grant Information from the Show Hope organization.

Showhope.org offers Adoption Aid Grants throughout the year between $8,000 and $12,000. The next upcoming deadline to apply is September 30, 2026. You can find out more on their website HERE.

Did you know we offer Life Enrichment Grants? A TSSUS life enrichment grant supports a positive opportunity for an individual with TS of any age.

Examples of opportunities include attending camp, taking lessons (for fun or work), fees for music, arts, or theater, classes (non-educational), to name a few. Approved applicants receive up to $200 to offset the cost of a life enriching program. These grants are awarded throughout the year, and you can apply by signing in to your TSSUS account.

Are You in the Turner Syndrome Research Registry? Don't miss the chance to be counted!

Did you take growth hormone, or do you struggle with reading social cues? Either way, your experience informs our TS researchers. We hope that you are one of the 1,600 people within the Turner Syndrome Research Registry who said YES to helping TS researchers learn more about TS. If you're not sure whether you are one of the 1,600 people, please take a quick moment to check! If you're already enrolled, make sure your information is up to date, so you receive relevant study opportunities. If you're not enrolled yet, you can sign up in a few minutes. 

✅ Check your status

✅ Update your information

✅ Help advance Turner syndrome research

Hearing Loss & Turner Syndrome: Programs That Can Help You Save on Hearing Aids

In a recent Turner Syndrome Research Registry survey, 258 people filled out Survey 4, and of those, 30% told us that hearing loss significantly affects their quality of life. This is a reminder of just how common this challenge is in our community. (If you’d like to participate in TS Survey 4, check your email if you joined the TS Research Registry or sign up HERE:

The good news is that hearing aids don't have to come with a full $5,000–$7,000 clinic price tag. Legitimate discount programs exist that can cut $500 to $3,000 off the cost of a pair of hearing aids for people who don't qualify for free devices through the VA or Medicaid. Below are a few options worth exploring, whether you're just starting your search or have been putting off the cost for years. Note that an AARP membership is available to anyone, regardless of age.

AARP Hearing Solutions (UnitedHealthcare Hearing):

AARP members get access to hearing savings and resources through AARP Hearing Solutions, provided by UnitedHealthcare Hearing. Members can save up to 50% on prescription hearing aids and up to $200 off over-the-counter hearing aids, and everyone gets a free hearing exam and consultation with personalized support through a nationwide network of hearing providers - no insurance is required.

Prescription hearing aid prices start as low as $699 each, and members also receive support from a licensed hearing professional throughout the purchase process.

This benefit comes with regular AARP membership (about $16/year); there is no separate program to join. If you also happen to have an AARP Medicare Supplement plan through UnitedHealthcare, there's an additional $100 off per name-brand prescription hearing aid on top of the standard AARP member discount - for a total of $200 off per pair - for the 2026 plan year.

Costco Hearing Centers:

Costco's volume purchasing power and flat-margin retail model result in hearing aids costing 40–60% less than private clinic pricing for comparable technology, with members saving roughly $3,000–$4,000 per pair on devices like the Kirkland Signature line, which uses technology licensed from the same company behind Phonak. Costco membership runs $65–$130/year, which is a small price compared with those savings.

Starkey Hearing Foundation: For those with financial need, the Starkey Hearing Foundation provides free hearing aids through local partners such as HLAA chapters, Lions Clubs, and community health centers, with eligibility typically based on income and devices fitted by partnering audiologists or hearing instrument specialists.



Vocational Rehabilitation Services in your state: Vocational Rehab will often help cover the expenses for hearing aids at the state level. Please search for your state and contact the appropriate office for more information. Lots of women with TS have reported positive outcomes by working with the vocational rehab program in their community.

A quick note of caution as you shop: a legitimate discount program will fit the device to your hearing test results - not the other way around - so be wary of any provider that pressures you toward a specific device before your evaluation is complete.

We hope this information helps you save money and brings you one step closer to better hearing. As always, reach out to our team if you'd like help thinking through your options.

As the Turner Syndrome Society of the United States approaches the

10th anniversary of the TSSUS Butterfly Society, we find ourselves reflecting with deep gratitude on what can happen when a community chooses to give not just generously - but faithfully.

Nearly ten years ago, the Butterfly Society was created as TSSUS’s exclusive monthly donor program, built on a simple but powerful belief: that consistent, sustainable support can change lives every single month. Today, because of the kindness and commitment of so many of you, that vision has flourished.

Together, Butterfly Society members have contributed just under $900,000 to advance education, research, awareness, advocacy, and support for every life touched by Turner syndrome.

The Butterfly Society remains one of TSSUS’s most important sustaining initiatives, helping ensure families have access to trusted resources, clinical care information, educational programs, support groups, conferences, research opportunities, and personal connections throughout every stage of life.

To every founding member, every current monthly donor, and every supporter who has chosen to give month after month - thank you. Your generosity has created something far greater than a fundraising program. You have created stability, opportunity, and hope.

As we celebrate this remarkable 10-year milestone, we invite others to become part of what comes next.

If you have ever wondered how you can make an impactful difference, this is one of the most powerful ways.

A monthly gift of $15, $30, $50, or any amount that is meaningful to you becomes part of something much larger - a dependable foundation that helps TSSUS serve the TS community not just today, but for years to come.

The Butterfly Society currently begins at $15 per month and includes an individual TSSUS membership. With a gift of $30 a month - or an increase to $30 a month, you will receive an exclusive TSSUS Butterfly Society t-shirt. 



The Turner Syndrome Society

My TS Story

Hello! My name is Kelli Gardella. I'm a 40-year-old butterfly. I was diagnosed just after I was born via karyotype and I have "classic" Turner syndrome(monosomy).

I had the typical butterfly childhood that included many medical appointments (cardiac issues in my case) and becoming resilient after dealing with peer cruelty at times. After high school I ventured into nursing. I was always fascinated by what nurses did as I was the patient a lot as a kid. It was the most challenging thing I've ever done, but it was worth it.

After I graduated nursing school, I passed my boards and became an RN. Before I worked as a nurse, it was time for my aortic valve to get replaced. This included being on blood thinners the rest of my life because of the mechanical valve they placed.

Life moved on and I worked in Med-Surg, Home Health, and Quality Assurance. In 2018, I suffered a stroke as a complication of the blood thinning medication. This was the darkest period I've faced in my life.

The incredible support I received from my family (especially my mom) along with my sheer stubborn will to not give up took me a long way in recovery and I don't have many residuals these days. I can flub up words on occasion, but we all can and I'm only human.

I did have to mourn the person I thought I was before the stroke and learn the fact that the person I am now is wiser, more compassionate, and more confident.

I'm married to my amazing husband Lewis. We have a cat named Albus and a cute condo we love. I continue to work in nursing in the education realm. For my fellow butterflies, I just wanted to share my story as a reminder that no matter what obstacles you face, if you accept the love of those around you and believe in yourself, anything can be achieved.

TSSUS Birthday Society Winner

As we tip-toe into Fall and cooler weather, this wardrobe staple is a

must-have! Order yours today in the TSSUS Butterfly Store.

Around 2017, the staff and board of directors considered several options for the TSSUS vision statement before settling on “An active and engaged TS community”. We believe that those with TS and their families were best served by being actively connected to TSSUS and other members of the TS community. 



TSSUS offers a wide-ranging event calendar that includes events that are purely social, and others that offer valuable and important educational topics. Pinky-swear you'll check the Event Calendar on the TSSUS website often to find an event that interests you.

All of our events require pre-registration. You can register for all of these events on our website using the Event Calendar link below.

CLICK HERE to Check the Events Calendar Check it Often so you don't miss out!

We have local and in-person events coming up in:

• August 22nd - TSSUS West Michigan Support Group Lunch, Grandville, Michigan. Register and learn more HERE.

• September 13th - TSSUS Florida Meet & Greet Lunch, Spring Hill, Florida. Register and learn more HERE.

• September 19th - TSSUS Western Washington Support Group Picnic, Wyoming, Washington. Register and learn more HERE.

And online events, including:



• August 23rd - TSSUS Butterfly Book Club Meeting. Register and learn more HERE.

• August 30th - TSSUS 40-Somethings Online Social for women with TS ages 40-49. Register and learn more HERE.

• August 30th - TSSUS 50-Somethings Online Social for women with TS ages 50-59. Register and learn more HERE.

• September 20th - Gliding with Your Golden Butterfly Wings Online Social for women with TS ages 55+. Register and learn more HERE.

• October 18th - Gliding with Your Golden Butterfly Wings Online Social for women with TS ages 55+. Register and learn more HERE.

Shopping is always fun, and when when you shop with a purpose it's even better! We love to share these opportunities with you to give you additional ways you can support TSSUS - through third party fundraisers.



Stay connected and in the loop on the latest news with TSSUS. Make some new friends. Join one of our official TSSUS Facebook groups!



Thank you for taking the time to read and share the TSSUS Connect newsletter. If you have something you'd like us to consider for publication, please send it to becky@turnersyndrome.org.

As always, we appreciate you!

Becky Brown, National Director of Development & Communications



 Turner Syndrome Society of the United States

 Toll Free: 800.365.9944

800-365-9944 | info@turnersyndrome.org