Weekly Updates! - May 10, 2024

Weekly Updates! - May 10, 2024

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

• Research opportunity: Project WellCAST is now enrolling caregivers!
  • Project WellCAST is an NIH-funded clinical trial enrolling legal guardians of 2 to 35-year old patients with a rare, neurogenetic disorder (like ours)!
  • This study is focused on CAREGIVER and FAMILY well-being.
  • If you are interested and eligible for the research study:
    • You’ll receive a FREE 12-week support program that can be completed 100% by telehealth!
      • This includes FREE mental health therapy, self-guided resources, and/or live peer coaching from other caregivers of neurogenetic conditions.
    • You will also provide data about your experiences and feelings before, during, and after your support program by completing standard forms real-time snapshot surveys sent to your smartphone.
      • You will be compensated up to $100 for completing these forms. Data collection for this project spans about 6.5 months, including the 12 weeks you are receiving your support program.
  • Interested?
    • Complete the screening form here to see if you’re eligible.
    • Read more about the project on their website.
    • If you have questions, reach out to the team at wellcast@purdue.edu.

• REMINDER: We’ve received several submissions of echocardiograms, EKGs, and cardiac data!
  • We have a researchers who are 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.
    • To have these documents included in the study, please have these submitted before Monday, May 13.

• REMINDER: TBRS Registry → call for MRI imaging data
  • We have a researcher who is interested in studying how an area of the brain is affected in TBRS through the use of MRI data from the registry.
    • If you have MRI reports and/or images 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.
      • To upload to the registry, please click here.

• EVENT: TBRS Friends and Family Support Group
  • Our next support group will be May 26, 2024 from 3-4pm EDT.
  • This is a virtual meeting. Meet with other parents, families, friends. and caregivers, and get to know one another. All are welcome!
    • To stay involved and be aware of all upcoming events, subscribe to our Google calendar here!

Thank you, and I hope you have a great weekend!Kit Church, Research Coordinator