November 7, 2025
April 1 - April 30, 2024
Event details:
Location: virtual
Date: 04/01/23 – 04/30/23
Duration: 30 Days
Be a hero for TBRS! Participant in the TBRS Exercise Challenge!
What is the TBRS Exercise Challenge?: The TBRS Challenge is a “Move-A-Thon” that raises money for TBRS while promoting a healthy lifestyle. Participants pick movement exercises, set goals, and collect sponsors for the event.
Who Can Participate? Anyone in the TBRS Community, Friends and Family!
Why Participate?: We are raising $25,000 by May 1, 2024, to expand the TBRS Patient Registry and get valuable patient data into the hands of our scientists and clinicians. This will allow clinicians around the world will finally understand the symptoms associated with TBRS, create appropriate surveillance and treatment guidelines, and move the needle forward on developing treatment options for people affected by TBRS. We will also be able to identify more patients with TBRS, and provide proper support and care. We need your support to achieve this important goal!
How to sign up: Click here for step-by-step guide to registering for the TBRS Exercise Challenge. We also have a video tutorial, available here.
Questions? Reach out to Jane Miller Hatton at rusty06084@gmail.com, or Kit Church at kit@tbrsyndrome.org for assistance!
Together, we can change our community and their future by building ourpatient registry! TBRS Community’s investment in the patient registry will allow for moretargeted research that will lead to improved treatments that help impacted families.
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