To our wonderful community,

When you purchase a ticket or make a donation to Have a Round for Tatton Brown, you are directly changing the future of our family and many others. We want to share a bit more about why this fight is so personal to us.

Our son Riley was born on New Year's Day in 2018. From the moment of his birth, we knew his body was different - but we just weren't sure why. Two years later, Riley spiked a fever of 102 degrees that lasted for nine months. In the search to cool his body down, we discovered that Riley has Tatton Brown Rahman Syndrome (TBRS). Shortly after we found the TBRS Community, a nonprofit that fights for kids like Riley.

TBRS is an ultra-rare genetic disease caused by a (mostly spontaneous) variant in the DNMT3A gene. Discovered in 2014, there are currently estimated to be around 500 diagnosed individuals in the world. TBRS has three unifying characteristics: overgrowth, intellectual disability, and recognizable facial features. TBRS can also affect many systems in the body, presenting with autism, heart defects, seizures, cancers, orthopedic issues and more.

Due to the small patient population size and it being a relatively new genetic condition, the full impact of TBRS is not yet fully known and is constantly changing. For example, a vital new finding is the severity of cardiac concerns: 54% of the 200 patients in the TBRS Patient Registry have been diagnosed with a heart condition or structural abnormality. Thanks to this crucial knowledge, we can now proactively monitor Riley's heart. Even more incredible, this new monitoring protocol has already impacted another child's life in the TBRS community - identifying a previously undetected heart defect before it posed serious, potentially life-threatening risks. This is exactly why the research the TBRS Community supports and facilitates is so critical.

The TBRS Community is dedicated to uplifting families affected by the syndrome and advancing research toward effective interventions. It is because of the research they have supported - and the network of families, clinicians, researchers, and stakeholders they have fostered - that we know so much about Riley’s health today. This research, community, and guidance touches every point of Riley's journey, both medical and beyond.

We look forward to spending a fun evening with you supporting this great work!

See you soon,
Zoe and Mike

Last year, Zoe was featured on The Story Collider podcast sharing a part of Riley's diagnostic journey from a parents perspective. Click here to listen if you're interested in hearing more about our journey with Riley.

Have a Round for Tatton Brown 2026

A night filled with heart, hope, and community.