November 14, 2025
Weekly Updates! - April 26, 2024
Hello everyone! I hope you’re having a great week. Here are some TBRS Community updates from this week:
- Biorepository samples IN ACTION!
- The TBRS Biorepository is a collection of patient samples that is readily accessible for research.
- Biorepository samples have been requested and sent for 2 Biomarker studies!
- A biomarker is a measurable factor or biological molecule specific to TBRS that can be analyzed to test potential treatments.
- These studies help us in our goal to identify therapeutics for TBRS, and this research would not be possible without the samples donated from TBRS patients!
- If you would like to participate in the TBRS Biorepository, click here.
- TBRS Baseball Card (Trading Card) - new translations!
- 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!
- This resource has been translated into German and Spanish!
- Click here for more information or to request your own 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!
- New Family Welcome Packet - translations!
- The TBRS Community New Family Welcome Packet is a resource that helps TBRS families, new and current, navigate TBRS information, support resources, and research participation.
- This document is currently in English but is being translated into Spanish and German.
- To access this resource, click here.
- The TBRS Community New Family Welcome Packet is a resource that helps TBRS families, new and current, navigate TBRS information, support resources, and research participation.
- REMINDER: TBRS Registry → call for echocardiograms, EKGs, and cardiac data
- We have a researcher who is interested in studying heart problems in TBRS through the use of the registry data, primarily echocardiograms and EKGs.
- If you have echocardiograms and EKGs that you have not uploaded to the patient registry, we encourage you to do so!
- These can also be sent to our Research Coordinator at kit@tbrsyndrome.org.
- You can also participate by filling out the cardiology survey in the TBRS Patient Registry.
- To participate, please click here.
- If you have echocardiograms and EKGs that you have not uploaded to the patient registry, we encourage you to do so!
- We have a researcher who is interested in studying heart problems in TBRS through the use of the registry data, primarily echocardiograms and EKGs.
Thank you, and I hope you have a great weekend!Kit Church, Research Coordinator
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