TBR1 Awareness day

September 1st 2022 we had our first TBR1 awareness day. All around the world our groups raised awareness for TBR1 mainly through social media. Some parents had t-shirts made with our TBR1 logo on it. In the USA one off the families organized a bike ride to spread awareness and in The Netherlands a newspaper article about Trenn, a Dutch 6 year old with a TBR1 mutation, came out on September 1st.

Mercedes Navarro: «El diagnóstico de Álvaro nos impactó mucho, en España no hay casos como el suyo» (28 Febrero 2022)

Sarah and Jesse in Erfelijkheid.nl

Sarah tells about the journey with Jesse. 6 Years ago, Jesse was one of the first children to be diagnosed with TBR1. Sarah writes about Jesse’s developmental delays very early in childhood and the search for a diagnosis. She stresses the feeling of loneliness after receiving the diagnosis, because doctors had (and still have) minimal knowledge about TBR1. Also at that time there was no TBR1 community as we now have.

Article on www.NVAVG.nl, January 2021

Dr J. van Vonderen and Dr T. Rozendaal are Jack’s doctors. Dr Van Vonderen is an AVG doctor (doctor for mentally disabled) and Dr Rozendaal is a child phychiatrist. They write this article about Jack in the TAVG, a magazine for AVG doctors, in order to raise awareness for the TBR1 syndrome.

Alvaro’s family in Heraldo Sarudable (february 2019)

Mercedes and Daniel, Alvaro’s parents, tell in a Spanish magazine about the TBR1 diagnosis of Alvaro.