Weekly Updates! - May 17, 2024

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?
    • 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: 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