News – TBRS Community

Evan’s Rainbow Warriors: A Bowling Tournament with Big Impact

At the TBRS Community, we often say that families are the heart of our mission. But sometimes, it’s the extended family who remind us just how powerful that heart can be. Meet Evan—a cousin to Olivia, a longtime supporter, and now a first-time event organizer. This year, Evan launched the Rainbow Warriors Bowling Tournament for TBRS, and we couldn’t be more proud to celebrate him and his incredible commitment.

Evan has been part of our journey for years, showing up, spreading awareness, and cheering us on. But in 2025, he decided to take it one step further by creating a fundraiser of his own. The Rainbow Warriors Bowling Tournament is not only a fun way to gather with friends and family—it’s a heartfelt tribute to his cousin Olivia and the entire TBRS Community. Proceeds from the event will go directly toward funding research, clinical care, and support programs that benefit individuals and families living with TBRS.

Events like Evan’s are vital. In fact, nearly half of the TBRS Community’s annual revenue comes from family-led fundraisers—proof that when people come together in love and purpose, real change happens. Whether it’s a karaoke night, a fun run, a trivia tournament, or a bowling party, these efforts build momentum for our mission in unforgettable ways.

We hope Evan’s story inspires you to think about how you might want to contribute. Hosting a fundraiser doesn’t have to be complicated—it just has to come from the heart.

Want to join Evan and become a Rainbow Warrior for TBRS?
Click the button above to check out the event or donate today!

To Evan: thank you for turning love into action. To everyone reading: we’d love to help you do the same. Let’s keep making memories—and making a difference. Contact Jill at [email protected] to get involved

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Big Rhyds’ TBRS Fundraiser in Wales – An International Effort for TBRS

News / kit

At the heart of the TBRS Community is a network of passionate, dedicated families who go above and beyond to make a difference—and the Williams Family is a shining example. We are proud to spotlight Big Rhyds’ TBRS Fundraiser in Wales, a joyful and heartfelt event that brings people together to raise money and awareness for Tatton Brown Rahman Syndrome (TBRS).

This special night will feature a show-stopping performance by Tom Davies, widely regarded as the best Michael Bublé tribute act in Wales. With bingo (at Rhydian’s enthusiastic request!) and a raffle full of amazing prizes, the event promises to be filled with laughter, connection, and purpose. Every penny raised will go toward research, education, and support initiatives that help individuals and families affected by TBRS.

Fundraisers like this are more than just events—they’re acts of love, community, and hope. The TBRS Community simply could not do the work we do without this kind of grassroots dedication. These gatherings are how we keep our momentum going—supporting science, improving care, and celebrating life along the way.

We’re incredibly grateful to Joanne, Ian, Rhydian, and Elian for dreaming up this night and making it happen. Their generosity and drive remind us that every great memory made at a family fundraiser also pushes our mission forward.

To the Williams Family—thank you. And to all who support them—thank you for being part of this international effort to improve the lives of people with TBRS.

Together, we’re making memories and making a difference.

Do you have an idea for a family fundraiser? We can help. Contact [email protected]

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Updated TBRS and DNMT3A Patient Registry has Launched!

News / kit

The Tatton Brown Rahman Syndrome (TBRS) and DNMT3A Patient Registry has undergone a major transformation, bringing new features that will enhance its impact and accessibility. This registry is more than just a data collection system—it is an interactive, participant-driven resource designed to empower individuals affected by TBRS, Heyn Sproul Jackson Syndrome (HESJAS), and DNMT3A-related disorders. Some of the key updates include the use of standardized surveys to improve data quality and the addition of Heyn Sproul Jackson Syndrome to expand the registry’s scope. We also have new translations in progress to ensure accessibility for participants worldwide. With these improvements, we are creating a more inclusive and comprehensive resource that will better serve the community and researchers alike.

By participating in the Patient Registry, individuals and families contribute directly to the advancement of research, helping scientists and clinicians uncover critical insights into DNMT3A-related conditions. The data collected can support the development of new diagnostic tools, guide treatment options, and improve clinical care for those affected. Every participant strengthens our understanding of these conditions, helping researchers identify patterns, potential therapeutic targets, and long-term health outcomes. Simply put, the registry gives a voice to those with TBRS, HESJAS, and DNMT3A variants, ensuring that patient experiences drive scientific discovery.

We are excited to announce that the updated DNMT3A and TBRS Patient Registry has arrived! This milestone would not be possible without the dedication of our volunteers and the TBRS Community members who have helped guide the migration to this improved platform. Your participation and support are key to making this registry as impactful as possible. Together, we can drive progress, improve care, and bring hope to those affected by TBRS, HESJAS, and DNMT3A-related disorders.

Get Involved!

New Participants: Click here to participate in the patient registry.

Former Participants: Look out for an email from [email protected] to migrate your old account to the new platform!

Updated TBRS and DNMT3A Patient Registry has Launched! Read More »

Understanding TBRS & Heart Health: New Cardiac Care Resource Available

News / kit

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!

News / kit

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!

📅 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! 💙

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Join the TBRS Exercise Challenge: Move for a Cause!

News / kit

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!

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