Columns

Even hemophilia can’t spoil sacred time with my son

After I had spent a few days lobbying legislators in Washington, D.C., my youngest son, Caeleb, joined me for some much-needed time together. I met him at the airport to start our madcap adventures. He was in a wheelchair due to chronic pain from numerous spontaneous bleeding…

Discussing platelet disorders with advocate Jeanette Jones

Last year, I had the privilege of connecting with Jeanette Jones, a former education manager at the Hemophilia Federation of America. During our conversation, she graciously guided me through a period tracker toolkit that she played a pivotal role in developing. Jeanette is a passionate advocate for…

Attending Washington Days reminds me that my voice matters

This week, I’m doing something I’ve never done before: stepping into the ring of politics and lobbying my congresspeople. Many of those in the bleeding disorders community gather annually in Washington, D.C., to meet with U.S. representatives and senators. The goal is simple: to remind legislators that medical care…