Weekly Updates! - April 12, 2024

Weekly Updates! - April 12, 2024

Hello everyone! Hope you’re having a great week. Here are some TBRS Community updates from this week:

• REMINDER: 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.
    • 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 your efforts to help us understand TBRS!
  • Click here to support the challenge!
• TBRS Registry → call for echocardiograms, EKGs, and cardiac data
  • We have a researcher who is interested in studying heart problems in TBRS through 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.
• EVENT: TBRS Parent and Caregiver Support Group
  • Saturday, April 20, 3-4 pm EDT
  • The TBRS Parent and Caregiver Social/Support Group is a virtual meeting. Connect with other parents, families, and caregivers, and get to know one another. All are welcome!
  • Click here to register.
• Overgrowth Syndromes Alliance (OSA) paper
  • OSA is a joint project with our colleagues at the Malan Syndrome Foundation
  • We have been working on a paper for a Rare Epilepsy Special Collection on seizures and epilepsy in overgrowth-intellectual disability disorders
    • This paper is in revision with the journal.
    • I will post a link to this paper when it has been published. We hope it will bring awareness to seizures/epilepsy in overgrowth syndromes.

Thank you, and I hope you have a great weekend!

Kit Church, Research Coordinator