Hello. I hope everyone has had a great week. I’d also like to thank everyone for the birthday wishes this week – I feel so appreciated by this community and thank you for letting me be a part of it! 🙂

I have a few updates to share to share this week:

• Cardiologist meeting this week – and our push for cardiac guidelines

• • • Its been shown that TBRS patients have a higher incidence of heart conditions like aortic root dilation and atrial septal defect, to name a few.
      • However, we have had trouble identifying researchers and clinicians in the cardiac field to help create clinical guidelines for our condition with regards to the heart.
    • This week, Jill and I met with a cardiologist who specializes in aortic root dilation, and recognizes the need for cardiac guidelines in our community!
      • We are hoping to see this relationship progress and to have more clinically actionable recommendations as a result!
    • For information on our current recommendations, click here.

• Join Us for a Special Talk on Hematology & Oncology in TBRS – with Dr. Rachel Rau 

• • We’re excited to welcome Dr. Rachel Rau for a special presentation on June 9 at 5 PM EST, where she’ll discuss hematology and oncology considerations for individuals with Tatton Brown Rahman Syndrome (TBRS). 
  • This session is a valuable opportunity for families and patients to learn from an expert in the field and better understand the latest insights related to blood and cancer-related health concerns in TBRS.
    • Don’t miss this chance to ask questions and stay informed—register here and join us live!  
    • If you are unable to attend, please sign up – a recording will be sent to families who are unable to attend!

• Reminder about an important resource: The TBRS Baseball Card!

• • • The TBRS Baseball Card (aka the TBRS Trading Card) is a resource with personalized information about a TBRS patient that caregivers can share with clinicians and other support professionals. The idea is to help teach those who work with the TBRS patient more about them and their symptoms.
    • Patients and families can request a personalized card, which can be printed at home!
      • This resource is available in English, German, Spanish, Dutch, and Japanese!
      • Click here for more information or to request your own card.

• SAVE THE DATE: 2026 TBRS Summit 

• • The TBRS Summit is planned for early 2026!
    • WHEN: Weekend of March 21, 2026
    • WHERE: Morgan’s Wonderland Camp in San Antonio, TX, USA
  • The TBRS Summit is where the magic happens—families, researchers, and clinicians come together to connect, learn, and push forward the future of TBRS care and research.
  • Stay tuned for more details, including registration and agenda updates!

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

Kit Church, CARE Manager