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!
- 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.
- New member of the 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:
- With the growing interest in our samples, we will be needing more patient donations soon!
- 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
- Here is the link to join: https://us02web.zoom.us/j/7181674734?omn=85034496409
- 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.
- This event will take place Monday, September 23, 2024 at 7:00 PM Eastern Time via Zoom
- 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
