Monthly Updates! - August 2026

Hey all! Just a few, quick updates for the last half of this month! (reminder that I’m going to but moving to monthly updates at the end of each month):

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• New Family Welcome Packet – Updated! 
  
  • We’ve released an updated version of our New Family Welcome Packet
  • Designed to be easier to follow, more actionable, and more family-friendly
  • What’s New:
    
    • Expanded research section with clearer ways to participate
    • Updated TBRS Fact Sheet with the latest information
    • Helpful tips throughout to make getting involved easier
  • View and download here
    
    • Whether you’re new or just need a refresher, this packet is a great place to start

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• Help Us Grow Our Community: Count Me In for TBRS 
  
  • We’re asking families to take a few minutes to complete Count Me In for TBRS (our contact registry)
  • What is Count Me In?
    
    • A simple, secure way for families to share basic information with the TBRS Community
    • Participation helps us understand how many individuals are in our community and where they are located
  • We have also translated Count Me In into Spanish, Dutch, and Japanese (with hope for additional languages in the future!)
  • If you haven’t filled it out yet, we’d truly appreciate you taking a moment to participate
    
    • Complete Count Me In here

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• Update on our PCORI Patient Priorities project 
  
  • I wanted to share another quick update on our Patient-Centered Outcomes Research Institute (PCORI) project! 
    
    • This project is helping us better understand the needs, experiences, and priorities of people with TBRS and their families so we can guide future research in a way that truly reflects our community.
  • Many of you helped by joining interviews and focus groups, including sessions we held during the Summit—thank you! 
    
    • Your time, honesty, and insights are incredibly important and will make a real difference.
  • We have almost completed the long process of “coding,” where we look for themes and patterns in what everyone shared. By mid-September, we hope to begin analyzing data!
    
    • Our goal is to finish analysis of the data by the end of September, and we hope to have more results and updates to share with you towards the end of October. (look out for more information about a recorded presentation and discussion on October 28, 2026!)

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• Translations for the TBRS & DNMT3A Patient Registry
  
  • I wanted to share a quick community update about the TBRS and DNMT3A Patient Registry.
    
    • Reminder: This registry is one of our most important tools for advancing research and understanding TBRS, HESJAS, and other DNMT3A-related conditions.
    • The Patient Registry is a secure, online patient registry hosted on the IAMRARE platform where individuals or caregivers can share health and lived experience data over time.
  • We’re excited to share that we are working toward making the registry more accessible globally. By the end of this year, we hope to launch translated versions of the registry - starting with:
    
    • Spanish 
    • French 
  • Making the registry more accessible means more families can participate in their preferred language, strengthening the quality and reach of our data.
    
    • Click here to participate or learn more

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• Upcoming events (follow the TBRS Community calendar to make sure you don’t miss any!):
  
  • TBRS Community Caregiver Webinar: Bodies, Boundaries, and Growing Up
    
    • Saturday, August 29, 2026 at 10 AM Eastern Time via Zoom
    • Register here 
  • TBRS Friends and Family Support Group
    
    • Saturday, August 29, 2026 at 3 PM Eastern Time via Zoom
    • Register here
  • TBRS Littles Support Group
    
    • Wednesday, September 16, 2026 at 10 AM Eastern Time via Zoom
    • Register here
  • Stryker Strong Golf Tournament Fundraiser 
    
    • Friday, September 18, 2026 at 7:30 AM and 1 PM Central Time at Frank House Golf Course in Bessemer, AL, USA
    • Click here for more information
  • Have a Round for Tatton Brown Fundraiser 
    
    • Saturday, September 19, 2026 at 6 PM Central Time at France 44 in Minneapolis, MN, USA
    • Click here for more information
  • Mr. P’z Cornhole Tournament Fundraiser 
    
    • Saturday, September 26, 2026 at 10:30 AM Eastern Time at Mr. P’z in Overland Park, KS, USA
    • Click here for more information

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I hope everyone has had a great summer and is looking forward to the fall season like I am (unless it's turning to spring where you are!). As always, please reach out to me with any questions at kit@tbrsyndrome.org. 

Kit Minor, CARE Manager