LETTER CHAIR from the

Dear PHA community:

As I read the wonderful articles and stories in this issue, I think about the year 2007 when we lost my niece to this disease. I decided to take an active role in the Pulmonary Hypertension Association (PHA) and quickly learned that there was a lot of work to be done regarding diagnosis and treatment.

At the time, I believe only one or two treatments were available, there was little awareness of pulmonary hypertension (PH) symptoms, and diagnosis was challenging.

I was amazed at the dedication of the medical professionals I was so fortunate to meet. We had a lot of work to do, and we had a great group of committed individuals working hard to push through the difficult challenges facing patients and caregivers in managing their PH worlds.

The spring 2023 issue of Pathlight shows how far we have come since then as well as opportunities ahead. We take a broad look at the current state of PH in the U.S. and worldwide. This issue includes an in-depth look at PH guidelines for treatment and diagnosis that were published in Europe in August 2022. The guidelines are expected to influence PH care and lead to earlier, more accurate diagnosis.

But PH care globally takes more than just research and guidelines. It takes grassroots efforts such those undertaken by Vinicio de Jesus Perez, M.D., of Stanford University Medical Center. Dr. Perez, a member of PHA’s Scientific Leadership Council, has made it his mission to advance international PH collaboration because research and treatment access vary throughout the world. He aims to bridge the gap between existing care guidelines and the reality of people with PH wherever they live. Our inspiring cover story details how artist Suzanne Miller manages her PH by focusing on mind and body wellness. Suzanne tells about her journey, from acute depression over her diagnosis, the loss of her home and possessions, to therapy, PH treatment and acceptance.

In this month’s donor spotlight, we hear from the bereaved family of Joanna Grey. Since Joanna’s 2021 death, her family has been striving to keep her memory alive. With their loss still fresh, Joanna’s family is working to preserve her legacy through PHA. They want to encourage other bereaved caregivers that hope and community can be found in the darkest places.

This issue also shows that the hard work of advocating for PH patients in the new Congress continues! After the 2022 midterm election brought new legislators to Congress, PHA is educating lawmakers about PH and laying out our legislative priorities.

In the 15 years that I have been involved with PHA, the accomplishments and advancements continue. This is why I chose to join this wonderful organization. I am so proud to see, first-hand, the continued successes and advances in diagnosis and treatment for PH patients and caregivers.

A special thank you to the medical community, researchers and the dedicated staff of the Pulmonary Hypertension Association. Let’s keep that momentum rolling through 2023 and beyond!

Tony Lahnston, chair, Pulmonary Hypertension Association Board of Trustees