This is my latest HCU Hero – Thiago. This story is still developing, and I will update this blog as more information is provided. Thiago is from Brazil, and his mother, Simone, first reached out to me on April 15, 2013 – right after the bombing at last year’s Boston Marathon. While we may speak different languages (Portuguese), we share the same goals for better treatments for HCU. I am glad to have Thiago on my team!
Thiago is 27 years old, and was diagnosed with HCU eight years ago. He is B-6 non-responsive, and needs to follow a low-protein diet for the rest of his life.
A big problem in Brazil is the difficultly in acquiring medical foods. To read more about Thiago’s story, check out this article:
If you’d like to make a donation to NORD’s HCU restricted research fund in support of Thiago, or another HCU Hero, please stop by my fundraising page for the 2014 Boston Marathon: