Weekly Updates! - May 24, 2024

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

    • REMINDER: TBRS Friends and Family Support Group THIS WEEKEND
      • 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!
  • TBRS Disease Concept Model
    • We have a graduate researcher creating a disease concept model for TBRS.
      • A disease concept model is an analysis of all current TBRS literature, and interviews with TBRS families to gather information that has not been reported, to fully describe the disorder. 
      • This is like a precursor to clinical guidelines, and helps get information published that might not be in literature at the moment!
    • We are beginning to schedule interviews for the Disease Concept Model, to get information on the patient experience. 
      • If you are interested in participating in this project through an interview, please reach out to me at [email protected].
  • Virtual conference this week – Collaborations and project management
    • Jill, Eric, and Kit attended a conference this week on projects and collaborations. We focused on the Overgrowth Syndrome Alliance, and used this opportunity to plan for future collaborative tasks. 
      • This conference was very helpful for streamlining programs in the future. 
  • REMINDER: 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?

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

Kit Church, Research Coordinator

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