Weekly Updates! - May 17, 2024

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

  • We have a new intern! 
    • Get to know our new intern, Kaho Kato, by reading her bio below!: 
      • My name is Kaho Kato. I am thrilled to start my practicum with the TBRS community. I am in a master of public health program at the University of Pittsburgh. Prior to starting this program, I completed my first master’s degree in genetic counseling and worked as a genetic counselor for 6 years in Japan. I have worked in cancer, prenatal, and general areas at general hospitals and a university hospital. In my free time, I like watching movies and traveling. Currently, I traveled to Puerto Rico and Portugal!
    • We are so excited to have Kaho joining our team this summer! Her wealth of genetics knowledge and her passion for helping others will be a great asset to our community! 
  • New member of the Medical and Scientific Advisory Committee
    • Our Medical and Scientific Advisory Committee is a group of TBRS clinicians and researchers who advise us on TBRS research and care. 
    • We’d like to welcome Dr. Scott Mellis to this committee!
      • Dr. Mellis has experience with clinical development for rare disorders, having worked in several different roles at pharmaceutical companies. 
        • Having him on our advisory board will give a great perspective on our journey to treatments and clinical trials. 
  • 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?
  • REMINDER: 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!

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

Kit Church, Research Coordinator

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