Have you or has someone that you love had a thrombotic storm event? Would you be willing to share your story on this website?

One of the goals of this website is to generate awareness about Thrombotic Storm. What better way to do this than to give TS a face. Each of you, whether as a patient or the friend or family member of someone who has experienced this, knows how isolating it can be. Until this website appeared, Thrombotic Storm simply didn't exist in the public eye. By viewing the stories of others, not only will those with Thrombotic Storm know they are not alone, but it is a first step to greater understanding for all. Please email your story to This e-mail address is being protected from spambots. You need JavaScript enabled to view it . Also feel free to call us at (877) 740-7744.

The first family story included is that of JJ Vance, a loving boy who died of thrombotic storm and to whom this website and research study is dedicated.

• JJ Vance's Story