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March 21, 2025

Understanding TBRS & Heart Health: New Cardiac Care Resource Available

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Download the fact sheet!

The TBRS Community is excited to release a new Cardiac Care & Surveillance Fact Sheet, designed to help individuals with Tatton Brown Rahman Syndrome (TBRS), their families, and healthcare providers understand the critical cardiac concerns associated with the condition. While TBRS is still a relatively new diagnosis, emerging research and our own TBRS Patient Registry data indicate that more than half of individuals with TBRS have a diagnosed heart condition or structural abnormality. Most notably, recent studies have highlighted aortic root dilation as a key concern, with some cases progressing rapidly and even requiring emergency surgery. This fact sheet compiles the latest research findings and expert recommendations to support better cardiac monitoring and care for those affected by TBRS.

The fact sheet emphasizes the importance of routine cardiovascular surveillance, including baseline and follow-up echocardiograms to track aortic dilation and other potential heart conditions. Given the evolving understanding of TBRS-related cardiac risks, we strongly encourage individuals with TBRS to consult with a cardiologist for regular monitoring. Our resource also provides insights from the latest studies and guidance on integrating cardiac surveillance into long-term care plans.

We are committed to keeping our community informed as research progresses. This fact sheet is just one way we aim to empower TBRS families and clinicians with the knowledge they need to proactively manage cardiac risks.

Download the resource today and learn more about recommended screenings!

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Save the Date: The 2026 TBRS Summit at Morgan’s Wonderland Camp!

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We are thrilled to announce that the 2026 TBRS Summit will take place the weekend of March 21st, 2026, at the one-of-a-kind Morgan’s Wonderland Camp in San Antonio, Texas! This incredible, fully accessible camp is designed to ensure that everyone can experience adventure, connection, and joy.

What Makes the TBRS Summit So Special?

The TBRS Summit is where our community comes together to learn, grow, and build lasting friendships. It’s a unique opportunity for families, researchers, and clinicians to connect in a supportive, welcoming environment. Our goal for 2026 is to make the Summit even more meaningful by increasing access to clinical specialists, providing more time for shared experiences, and making sure there’s plenty of fun along the way!

A Camp Designed for Everyone

Morgan’s Wonderland Camp is a dream location for our Summit. Built with accessibility at its core, the camp offers a wide range of adaptive and inclusive activities that ensure everyone can participate:

  • Zip-lining and high ropes with full adaptive support
  • Swimming and splash pads in an accessible aquatic center
  • Horseback riding with specialized saddles and assistance
  • Fishing, archery, and nature trails designed for all mobility levels
  • Campfires, arts and crafts, and interactive group activities

This setting gives our families the chance to experience new adventures without limits, in a safe and fully supportive environment.

A Focus on Clinical Care and Community

One of our biggest goals for the 2026 Summit is to increase clinical engagement so families can get expert insights into TBRS care. We’re working to bring in more clinical specialists, therapists, and researchers who can provide hands-on learning sessions, Q&A panels, and one-on-one consultations. We also want to leave plenty of time for families to share their experiences, exchange knowledge, and support one another.

What to Expect

The weekend will include:
 ✅ Research & Clinical Updates – Learn about the latest advancements in TBRS care and treatment
 ✅ Breakout Sessions & Panels – Connect with experts on key topics like cardiac care, behavior strategies, and genetic research
 ✅ Parent & Caregiver Discussions – Open conversations about advocacy, navigating healthcare, and building support networks
 ✅ Family Fun & Connection – Time to relax, play, and create unforgettable memories with other TBRS families

Stay Tuned for More Details!

We can’t wait to welcome you to Morgan’s Wonderland Camp for an unforgettable TBRS Summit experience! More details, including registration, accommodations, and agenda updates, will be shared soon—so stay tuned!

đź“… Save the Date: March 21st, 2026
 📍 Morgan’s Wonderland Camp | San Antonio, TX

This is going to be our best Summit yet, and we hope to see you there! đź’™

Save the Date: The 2026 TBRS Summit at Morgan’s Wonderland Camp! Read More »

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Join the TBRS Exercise Challenge: Move for a Cause!

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The TBRS Exercise Challenge is more than just a fundraiser—it’s a movement that brings our community together to make a real difference in the lives of people with Tatton Brown Rahman Syndrome (TBRS). Launched in 2020 by Ashley Hatton, a person with TBRS, this annual event encourages participants to set personal fitness goals while raising money to fund essential programs for the TBRS Community.

Why It Matters

Every dollar raised through the TBRS Exercise Challenge helps fund education, support, and research. This year, we’re focused on two critical initiatives:

  • Creating a clinical series to educate doctors and families on best practices for TBRS care.
  • Formalizing surveillance and treatment guidelines to improve medical care and outcomes for individuals with TBRS.

With over 200 participants in our patient registry, we’re learning more than ever before about the medical needs of individuals with TBRS—and your support helps turn that knowledge into action.

How to Get Involved
  • Set Your Challenge: Choose an activity—walk, run, swim, cycle, dance, or any movement that gets you moving!
  • Fundraise: Create a personal fundraising page and ask friends, family, and coworkers to support your efforts.
  • Share Your Journey: Post your progress on social media with #TBRSExerciseChallenge to inspire others.
  • Donate: Not ready to participate? You can still make a difference by donating to the cause.
Make an Impact Today!

Every step, pedal, and jump brings us closer to a brighter future for those living with TBRS. Join the movement, challenge yourself, and be part of something bigger!

Sign up or donate today!

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Weekly Updates! – March 21, 2025

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Weekly Updates! - March 21, 2025

Hello everyone, and happy Spring (Northern Hemisphere) or Fall (Southern Hemisphere)! I have a few updates this week:

  • Read our first ever IMPACT REPORT now!
      • We’re excited to share our first-ever Impact Report, showcasing the incredible progress we’ve made over the years! 
        • This report highlights all of our accomplishments, from groundbreaking research to global advocacy
        • The report also shows the power of patient-driven efforts, and how much we can do together.
      • Click here to read the full report and see how your support has fueled real change!
  • Join the TBRS Exercise Challenge 2025 before it’s too late!!
      • We have officially launched the 2025 TBRS Exercise Challenge! 
        • Through this challenge, individuals with TBRS commit to a daily exercise of their choice in exchange for pledges and donations to the TBRS Community. This presents an exciting fundraising opportunity while encouraging healthy practices for individuals with TBRS.
        • In March, individuals can sign up for the Challenge and begin collecting pledges. The Challenge takes place throughout the month of April!
      • To register, visit the TBRS Exercise Challenge website and click “join team”
        • Here you can sign up and create your team for the challenge!
      • Anyone can participate in the challenge – and all of the funds raised go to improving the Patient Registry and making data more easily accessible for research!
      • If you have any questions or need help setting up your team, please contact me at [email protected].
  • Upcoming TBRS Conference in Spain!
  • Upcoming: TBRS Friends and Family Support Group – March 30, 2025
    • This event will take place Sunday, March 30, 2025 at 2:00 PM Eastern Time via Zoom
    • The TBRS Community offers a monthly Friends and Family Support Group via Zoom. Families from all around the world can participate. We create a safe place to share thoughts, feelings, concerns, and emotions without judgment. The meeting seems to take a different shape every time we gather—sometimes we focus on sharing resources or experiences, but we always seek to make everyone feel comfortable and supported. 
    • Any parents or caregivers of someone diagnosed with TBRS are welcome. 

Thanks! Please reach out to me with any questions at [email protected].

Kit Church, CARE Manager

Weekly Updates! – March 21, 2025 Read More »

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