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

• Leave a lasting legacy with the Dorothy G. Hatton Legacy Society

• • • We are proud to introduce the Dorothy G. Hatton Legacy Society, named in honor of a cherished TBRS grandma who was the first person to ever include the TBRS Community in her planned giving.
    • Legacy gifts play a crucial role in ensuring the long-term sustainability of the TBRS Community. These gifts allow us to: 
      • Provide essential resources, 
      • Support families affected by TBRS, 
      • Advance critical research toward treatment development,
      • Expand our programs, 
      • Increase our outreach, and 
      • Offer hope to those living with TBRS. 
    • There are financial and tax advantages for donors as well, including:
      • Estate Tax Reduction
      • Income Tax Benefits
      • Flexibility and Control
      • Enduring Legacy
    • Click here to learn how you can contribute!

• 2nd Regional Coordinators meeting – planning soon!

• • • Regional Coordinators are volunteers located across the globe who are responsible for sharing TBRS Community programming and research information with their region, planning events for the area, and ensuring that all TBRS families are receiving the support they need.
      • For more information on this role, please visit the TBRS Volunteer form (page 6).
    • We have several Regional Coordinators currently, and will be meeting again in the next few weeks!
      • If you are interested in becoming a Regional Coordinator, it’s not too late to join! Please reach out to me at [email protected]

• REMINDER: Opportunities to donate to the Biorepository

• • • With the growing interest in our samples, we will be needing more patient donations soon!
      • The TBRS Biorepository is a collection of patient blood samples and other tissues that are readily accessible for research.

• • Below are the dates for upcoming rare disease conferences where you can donate to the Biorepository:

• • • September 25-28 – Atlanta, GA
    • September 29 – Kansas City, MO (I’ll be at this conference!)
    • December 5-6 – Los Angeles, CA
  • If you are interested in donating to the TBRS Biorepository at any of these locations, please contact [email protected]. 

• REMINDER: Signing up for Citizen Health has never been easier!
  • Exciting News: Citizen Health, formerly Ciitizen, has launched a brand new onboarding experience – and it’s better than ever! 
    • We’ve teamed up with Citizen Health for the easiest way to build vital natural history studies for our community. 
    • Citizen Health is a program that will collect all medical records in one convenient, online location. These records can then be shared with researchers, if you so choose!
  • Help us reach our goal! It just takes five minutes to sign up, completely digital. 
    • Citizen Health is currently only able to collect records for participants in the United States, BUT participants can join around the globe and upload their own documents.
      • Citizen Health is currently running trials to expand to other English-speaking countries, and then plan to extend further!
  • Click here to sign up for Citizen Health!

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

Kit Church, CARE Manager