Weekly Updates! - August 23, 2024

Weekly Updates! - August 23, 2024

Hello everyone! I hope you’re having a great week! Here are some TBRS Community reminders 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!

• 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 kit@tbrsyndrome.org.

• 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