Olivia was diagnosed in 2019 after 4+ long years of fighting for answers (we will be forever grateful to Boston Children's Hospital!). To be told your child has such a rare disease that only 250 people worldwide have been diagnosed, is not something we were expecting. Olivia is taking on this challenge to raise awareness for her condition, to raise money to fund important research and to instill healthy behaviors into her everyday life!  We appreciate your consideration :) 

Be a hero for TBRS! Donate or become a participant by joining the TBRS Exercise Challenge.

Your support will help us expand the TBRS Patient Registry and get valuable patient data into the hands of our scientists and clinicians. By doing so, 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.

The TBRS Challenge is a “Move-A-Thon” that raises money for TBRS while promoting a healthy lifestyle. Show your support - donate to your loved one’s team, or to the general cause. Want to do even more? Become a participant! Create your own team and promise to exercise for the month of April. Ask your friends and family to pledge their support by donating. Participants can choose what type of exercise they will do. 

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