Weekly Updates! - May 24, 2024

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!
      • To stay involved and be aware of all upcoming events, subscribe to our Google calendar here!

• 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 Kit@tbrsyndrome.org.

• 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?
    • 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.

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