News – TBRS Community

Sponsorship Opportunities Now Open for the TBRS Community Summit 2026!

We’re thrilled to announce that the TBRS Community Summit 2026 will take place March 18–22, 2026 at the beautiful, inclusive Morgan’s Wonderland Camp in San Antonio, Texas! This life-changing event brings together families, researchers, and clinicians from around the world to advance the science, share knowledge, and deepen support for everyone affected by Tatton Brown Rahman Syndrome (TBRS). As we prepare for this unforgettable gathering, we’re inviting sponsors to help make it all possible.

Why Your Support Matters
There are no approved treatments or cures for TBRS—but together, we can change that. By sponsoring the Summit, you’ll help fund vital programming, ease the financial burden on families, and fuel research toward life-improving therapies.

Sponsorship Levels for Every Mission and Budget
From Gold ($15,000) and Silver ($10,000) event sponsors to targeted opportunities like:

Sponsor a Family – Help a family attend ($2,000)
Sponsor a Scientist – Support a young researcher’s travel ($1,500)
Sponsor a Meal – Provide a delicious and inclusive meal ($2,000 per meal)
Research Hero ($20,000) – Fund a TBRS research project in your name

Even small contributions help us make a big impact! Additional tiers starting at just $250 offer recognition and visibility across Summit materials and online platforms.

Special Guests Include
Gordon Hartman (Founder of Morgan’s Wonderland), Dr. Kate Tatton-Brown (TBRS namesake), and Dr. Harrison Gabel (TBRS Collaborative Research Network) will be joining us—along with dozens of passionate families and scientists ready to connect.

How to Get Involved
Want to learn more or connect a potential sponsor?
Visit: https://givebutter.com/2026Sponsor
Or reach out directly to our team: [email protected]

Together, we can make the 2026 Summit more impactful than ever—bringing hope, healing, and progress to families around the globe.

We are stronger together.

Sponsorship Opportunities Now Open for the TBRS Community Summit 2026! Read More »

Updated TBRS Fact Sheet Released with New Cardiology, Blood, and Cancer Sections

News / kit

We’re excited to share the release of the updated Tatton Brown Rahman Syndrome (TBRS) Fact Sheet, now featuring expanded sections on cardiology and hematology/oncology. These additions reflect the most current knowledge about heart conditions, blood disorders, and cancer risks associated with TBRS.

This progress is only possible because of the families who contributed to the TBRS and DNMT3A Patient Registry, along with the dedication of clinicians and researchers working to better understand this newly identified rare disease. Their combined efforts have helped us accelerate the timeline of discovery—turning years of clinical observations into actionable insights.

The updated fact sheet includes:

A summary of common and emerging symptoms in TBRS
Expanded detail on aortic root dilation, including new data from our community
Information on reported blood cancers and solid tumors, with practical information for conversations with your care team
Information for clinical specialists to consider as part of care coordination

Please remember: This fact sheet is not medical advice and not a substitute for individualized care. It is a resource to help guide discussions between families and their healthcare providers.

Thank you to every family who shares their story, and to the medical professionals who are helping us build a better future for people with TBRS.

Updated TBRS Fact Sheet Released with New Cardiology, Blood, and Cancer Sections Read More »

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

News / kit

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

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

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]

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

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!

Understanding TBRS & Heart Health: New Cardiac Care Resource Available Read More »