Letter From the Chair

Dear PHA Community,

At the Pulmonary Hypertension Association (PHA), we have long seen ourselves “empowered by hope.” To me, being empowered means finding and using tools to make a difference. And hope means wanting something to happen and thinking it will be possible.

Our hope at PHA is a better life for the PH community and a cure for PH.

We use that hope, and our belief that it is possible, to empower us. Through that empowerment we support one another, fundraise, contribute to research, educate, and so much more.

As PHA approaches its 30th anniversary, this edition of Pathlight focuses on “Lighting the Way Forward.” To do that, it helps to look back, as well as to look ahead.

I remember when I was first diagnosed almost 13 years ago. I would look to the long-term survivors with so much awe, wondering how they did it. I hoped that someday I could be like them – defying the odds and leading the path forward.

You’ll hear from some of these early heroes in this month’s cover story, “PH Through the Years.” People like Gwendolyn Brown, Alex Flipse and Diane Ramirez, who were diagnosed in the 1980s and 90s, have lived through and benefited from breakthrough developments of lifesaving treatments.

In “Flolan at 25,” you’ll hear from Jeanette Morrill and Joanne Volpe, who were diagnosed before treatments existed – and were brave pioneers trying the very first.

We also take some time to honor one of our founders, Pat Paton. Pat sadly passed away this year. Her vision – and that of a core group of family and other patients who saw what PHA could be – led to the organization we know today.

Pat and the founders didn’t just light the way forward. They blazed the whole early trail. Pat is truly missed, but we remember her with honor and learn from the example she set.

These stories inspire us. As we look to learn from one another, those in the medical profession are pushing forward as well. In “Beyond the Biomarkers,” Jane Leopold, M.D., discusses a study that could upend current PH classifications based on cause.

The science is exciting, and it’s getting better every day.

Finally, as we close out this wild and unprecedented year, I want to take a moment to thank you for being a part of PHA. Things have been difficult in the world in so many ways. But through it all, PHA remains steadfast and here to help, and you are a part of that. For that, I am truly grateful.

Warmly,

Colleen Brunetti, M.Ed., C.H.C.

Board of Trustees Chair, Pulmonary Hypertension Association