This series gives us an opportunity to check in with some of the advocates we talked to over the course of our book’s three editions and 14 years, get an update on their work and see where exactly their paths have taken them. 

Policies are not fixed; they can be shaped—and reshaped—by the voices and lived experiences of the people they affect.

In a guest post, advocate Jim Kuhn shares why it is so important for members of the rare disease community to share their lived experiences.

“Legislators often don't understand the context: these women are our military partners. They were recruited, trained, deployed and put in harm's way under our operational direction.”

The organization knew that Barry was valuable to them achieving their advocacy goals, because he had lived experience as a veteran—as well as a passion for the desert that spans more than five decades.

“I’ve found that one of the best ways to encourage people in making healthy choices is to understand the story they are telling themselves about their lives.”

“By shifting my focus from anger to persuasion, I began to see more people engaging with the issue. Conversations became more productive. Skeptics weren’t just pushed away or ignored; they were invited to understand.”

“Youth need to be at that table, sitting with executive leaders, emphasizing that we have a very different perspective and they can't be making decisions for us.”