Weekly Updates! - April 5, 2024
Hello everyone! Hope you’re having a great week. I apologize for not posting updates the last 2 weeks, we have been a bit busy with traveling to conferences and wrapping up some plans. Here are some TBRS Community updates from the last few weeks:
- TBRS Exercise Challenge – NOW LIVE
- The TBRS Exercise Challenge kicked off April 1!
- The TBRS Challenge is a “Move-A-Thon” that raises money for TBRS while promoting a healthy lifestyle.
- Participants pick movement exercises, set goals, and collect sponsors for the event.
- ANYONE can participate in this challenge.
- This year, money raised will be used to fund updates to the TBRS Patient Registry, including translations and standardization of data to increase the value of the data!
- Click here to support the challenge!
- The TBRS Exercise Challenge kicked off April 1!
- TBRS Baseball Card – 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!
- It will be available in Spanish soon.
- 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.
- TBRS Conference in Spain
- The TBRS Conference in Burgos, Spain was Friday, March 22 – Sunday, March 24, 2024. This was put on by the TBRS spain community, Asociación Española de Síndrome de Tatton Brown Rahman.
- For more information, click here.
- The TBRS Conference in Burgos, Spain was Friday, March 22 – Sunday, March 24, 2024. This was put on by the TBRS spain community, Asociación Española de Síndrome de Tatton Brown Rahman.
- TBRS Conference in France
- The TBRS Conference in Nancy, France was Friday March 29, 2024.
- For more information, click here.
- The TBRS Conference in Nancy, France was Friday March 29, 2024.
- TBRS Community website updates
- We are currently updating the TBRS Community website – the new website will have a family section and a researcher section, with more updated information and translation ability.
- We are also including a newsletter archive, a gene variant walkthrough, and easy access to support and research resources.
- I will have more information on this as the website is developed!
- We are currently updating the TBRS Community website – the new website will have a family section and a researcher section, with more updated information and translation ability.
- Grant applications
- This week, we have collaborated on several different grants to benefit the TBRS Community and the Overgrowth Syndromes Alliance (OSA) research.
- As we hear back regarding these applications I will post more information
- If you have any questions about this, please feel free to reach out to me.
- This week, we have collaborated on several different grants to benefit the TBRS Community and the Overgrowth Syndromes Alliance (OSA) research.
- Applications for TBRS Registry data
- Recently, we have had 3 more applications for TBRS Registry data access.
- We are reviewing these applications, but this truly shows the importance of the Patient Registry!
- We are also in the process of updating this registry, which we are hoping to have completed in the coming months.
- To participate in the TBRS Patient Registry, click here.
- Recently, we have had 3 more applications for TBRS Registry data access.
Thank you, and I hope you have a great weekend!
Kit Church, Research Coordinator
