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Weekly Updates! – October 11, 2024

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Weekly Updates! - October 11, 2024

Hey everyone! I hope everyone has had a great week. Here are some TBRS Community updates and reminders for this week:

  • Looking for volunteers to translate TBRS Community materials!
      • As a part of our global initiative for TBRS, we are looking for volunteers to translate TBRS materials, like:
      • Having these materials in other languages will increase accessibility for many patients and families with TBRS worldwide!
      • We welcome translations in any language, though our largest focuses include:
        • French
        • German
        • Chinese
      • If you are available to translate any TBRS Community resource into another language, please consider volunteering! Reach out to [email protected]!
  • EVENT: Halloween Social – October 19, 2024
      • We are hosting a Halloween Social on Saturday, October 19 from 12-1pm ET. 
        • This meeting will be a fun opportunity for diagnosed individuals and families to play games and have fun! 
      • We are also looking for volunteers for this social, as well as future events. Many thanks to Jane Hatton for organizing this event, but she could still use some help!
        • If you are interested in volunteering for this or any future socials, please reach out to Jane at [email protected]. 
      • All are welcome to attend. Halloween costumes are encouraged, but not required. Come ready to have some spooky fun!
  • EVENT: TBRS Friends and Family Support Group – October 26, 2024
    • This event will take place Saturday, October 26, 2024 at 3:00 PM Eastern Time via Zoom
    • The TBRS Community offers a monthly Friends and Family Support Group via Zoom. Families from all around the world can participate. We create a safe place to share thoughts, feelings, concerns, and emotions without judgment. The meeting seems to take a different shape every time we gather—sometimes we focus on sharing resources or experiences, but we always seek to make everyone feel comfortable and supported. 
    • Any parents or caregivers of someone diagnosed with TBRS are welcome. 

I’ll be out of the office next week, but will be back on Monday, October 21. Thank you, and I hope you have a great couple of weeks.

Kit Church, CARE Manager

Weekly Updates! – October 11, 2024 Read More »

Weekly Updates! – October 4, 2024

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Weekly Updates! - October 4, 2024

Hello everyone! I hope everyone has had a nice couple of weeks. Here are some TBRS Community updates and reminders for this week:

  • Global Genes Rare Advocacy Summit
      • Last week, I attended the Global Genes Rare Advocacy Summit in Kansas City, MO, USA, to represent our Community. 
        • This event brings together people who work with rare diseases, including patients, families, researchers, and organizations, to help improve care and support for these conditions.
      • The summit focused on important topics like helping families get involved in research, learning how to navigate health policies, and working together with other rare disease groups. 
      • It also highlighted how families can shape research and why it’s so important for us to be part of these efforts!
        • I’m very excited to implement some of these learnings in my position and with our Community!
  • EVENT: Halloween Social – October 19, 2024
      • We are hosting a Halloween Social on Saturday, October 19 from 12-1pm ET. 
        • This meeting will be a fun opportunity for diagnosed individuals and families to play games and have fun! 
      • We are also looking for volunteers for this social, as well as future events. Many thanks to Jane Hatton for organizing this event, but she could still use some help!
        • If you are interested in volunteering for this or any future socials, please reach out to Jane at [email protected]. 
      • All are welcome to attend. Halloween costumes are encouraged, but not required. Come ready to have some spooky fun!
  • Reminder: Opportunities to donate to the Biorepository
      • Thanks to everyone who donated to the Biorepository in Kansas City last weekend! If you are interested in donating, we still have a few opportunities left for this year! 
        • 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:
        • November 11 – Nashville, TN
        • 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]. 
    •  

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

Kit Church, CARE Manager

Weekly Updates! – October 4, 2024 Read More »

Weekly Updates! – September 20, 2024

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Weekly Updates! - September 20, 2024

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

    • 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. Laura Lavery to this committee!
        • Dr. Lavery is a molecular neuroscientist. Her lab’s goal is to determine how variants in genes related to epigenetics (like TBRS and DNMT3A) cause altered neurodevelopment.
          • Having her on our advisory board will give a great perspective on our journey to treatments, particularly for neurological symptoms. 
        • Click here to view the profiles for our Medical and Scientific Advisory Committee!
  • 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 
        • November 11 – Nashville, TN
        • 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]. 
  • EVENT: Have a Round for Tatton Brown! – Sept 21, 2024
      • Have a Round for Tatton Brown is a fundraiser event in support of the TBRS Community, hosted by Zoe and Michael Wisnoski. This event is back for its second year! 
      • Event details:
        • Date: Saturday, September 21, 2024
        • Location: France 44 in Minneapolis, MN, USA 
        • The event will include wine tasting, cocktail tasting, appetizers, and a silent auction!
      • Click here to sign up!
  • EVENT: TBRS Friends and Family Support Group – Sept 23, 2024
      • This event will take place Monday, September 23, 2024 at 7:00 PM Eastern Time via Zoom
      • The TBRS Community offers a monthly Friends and Family Support Group via Zoom. Families from all around the world can participate. We create a safe place to share thoughts, feelings, concerns, and emotions without judgment. The meeting seems to take a different shape every time we gather—sometimes we focus on sharing resources or experiences, but we always seek to make everyone feel comfortable and supported. 
      • Any parents or caregivers of someone diagnosed with TBRS are welcome. 
  • EVENT: 6th Annual Stryker Strong / TBRS Golf Tournament – Sept 27, 2024
    • The Stryker Strong Golf Tournament is an annual event that aims to raise awareness of TBRS. All the proceeds from the event will benefit Stryker Strong, the TBRS Community, Anoxic Brain Injury Research, and various other local families and charities.
    • Event details:
      • Date: Friday, September 27, 2024
      • Location: Bent Brook Golf Course, Bessemer, AL, USA
      • Time: Shotgun Start 8 AM & 1 PM
    • Click here for more information!

I will be at a conference next week and will not be posting updates, but I should have plenty to talk about the following week! Thank you, and I hope you have a great weekend!

Kit Church, CARE Manager

Weekly Updates! – September 20, 2024 Read More »

Weekly Updates! – September 13, 2024

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Weekly Updates! - September 13, 2024

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

  • (New) 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 
        • November 11 – Nashville, TN
        • 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]. 
      •  
  • EVENT: The Clubine Family TBRS Cornhole Tournament – Sept 14, 2024
      • The Clubine family is hosting a lively Cornhole Tournament at Tumbleweed Bar and Grill to raise funds for the TBRS Community!
      • Event details:
        • Date: Saturday, September 14, 2024
        • Location: Tumbleweed Bar and Grill, 615 E Main St, Gardner, KS, USA
        • The event will include a cornhole tournament, as well as a silent auction and raffle (listed on the Tumbleweed Bar and Grill Facebook page)!
      • Click here to donate and/or sign up!
  • EVENT: Special Education Support Group – Sept 16, 2024
      • This event will take place Monday, September 16, 2024 at 7:00 PM Eastern Time via Zoom
      • The TBRS Community is hosting a Special Education Support Group via Zoom. All are welcome to participate.
      • This meeting will allows families to discuss and support each other with struggles and successes concerning the special education system. Families at any point in their special education journey are encouraged to join.
  • REMINDER: Have a Round for Tatton Brown! – Sept 21, 2024
      • Have a Round for Tatton Brown is a fundraiser event in support of the TBRS Community, hosted by Zoe and Michael Wisnoski. This event is back for its second year! 
      • Event details:
        • Date: Saturday, September 21, 2024
        • Location: France 44 in Minneapolis, MN, USA 
        • The event will include wine tasting, cocktail tasting, appetizers, and a silent auction!
      • Click here to sign up!
  • EVENT: TBRS Friends and Family Support Group – Sept 23, 2024
      • This event will take place Monday, September 23, 2024 at 7:00 PM Eastern Time via Zoom
      • The TBRS Community offers a monthly Friends and Family Support Group via Zoom. Families from all around the world can participate. We create a safe place to share thoughts, feelings, concerns, and emotions without judgment. The meeting seems to take a different shape every time we gather—sometimes we focus on sharing resources or experiences, but we always seek to make everyone feel comfortable and supported. 
      • Any parents or caregivers of someone diagnosed with TBRS are welcome. 
  • EVENT: 6th Annual Stryker Strong / TBRS Golf Tournament – Sept 27, 2024
    • The Stryker Strong Golf Tournament is an annual event that aims to raise awareness of TBRS. All the proceeds from the event will benefit Stryker Strong, the TBRS Community, Anoxic Brain Injury Research, and various other local families and charities.
    • Event details:
      • Date: Friday, September 27, 2024
      • Location: Bent Brook Golf Course, Bessemer, AL, USA
      • Time: Shotgun Start 8 AM & 1 PM
    • Click here for more information!

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

Kit Church, CARE Manager

Weekly Updates! – September 13, 2024 Read More »

Weekly Updates! – September 6, 2024

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Weekly Updates! - September 6, 2024

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

  • EVENT: Have a Round for Tatton Brown! – Sept 21, 2024
      • Have a Round for Tatton Brown is a fundraiser event in support of the TBRS Community, hosted by Zoe and Michael Wisnoski. This event is back for its second year! 
      • Event details:
        • Date: Saturday, September 21, 2024
        • Location: France 44 in Minneapolis, MN, USA 
        • The event will include wine tasting, cocktail tasting, appetizers, and a silent auction!
      • Click here to sign up!
  • Thanks to our Community for your help with registry testing!
      • We have been working to update our Patient Registry for some time now
        • Some of these changes include using standardized surveys, including Heyn Sproul Jackson Syndrome, and translating the Registry into other languages.
        • We are excited to say that we have moved into the testing phase for these changes!
      • Thank you to the volunteers who have diligently completed and given feedback on the new Patient Registry! With your help, we will have a more comprehensive and accessible Patient Registry platform soon!
  • 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 27-28 – Atlanta, GA
        • September 29 – Kansas City, MO 
        • November 11 – Nashville, TN
        • 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]. 
  •  

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

Kit Church, CARE Manager

Weekly Updates! – September 6, 2024 Read More »

Weekly Updates! – August 23, 2024

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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 [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

Weekly Updates! – August 23, 2024 Read More »

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