My name is Colleen Brunetti, and I am your Pulmonary Hypertension Association (PHA) Board of Trustees chair-elect. I’m the first patient to serve in this volunteer position in many years, and the enormity of that honor does not escape me. Truly, at PHA, we stand on the shoulders of great leaders who have come before us.
It’s rare, if not unheard of, for great leaders to just start their work with a huge impact. Before we see really big things from people, there are a million tiny steps they took outside the public eye or quietly in a small group. There are dozens of missteps, and tiny triumphs and learning opportunities, all leading to that first time they really make an impact and people begin to respond.
For me, my first steps into leadership at PHA began by sitting in on a focus group. The organization wanted to know more about what it was like to be a young adult with PH and how PHA could best support this demographic. I told my story, and I was heard.
From there, I helped found Generation Hope, a task that involved mostly behind the scenes work, crafting a group and an experience where it was safe to tell your story for patients just like me. We told our stories, and we were heard.
And then things began to build. I realized that the more I told my story, in all it’s vulnerability and messiness, the more of an impact I was having. Reciprocally, telling my story corresponded with the more I began to heal, certainly emotionally, if not a little bit physically as well. I was having an impact, and that made the burden of a rare disease a little less heavy.
Over a decade has passed since I first tentatively began to tell people that I was sick, and what I hoped they would do in response, from spread the word about my rare disease, to donating to PAH, to just being someone who could listen. It all counts.
I still don’t know what my future with PH holds. I probably never will until I’m in the moment of having to make a hard decision. But I do know that telling my story, and that telling your story, matters. And when you tell your story, you impact people in ways you can’t imagine. Please watch the video to learn more, and to find out about a special gift this PH Awareness Month.