As PHA celebrates its 35th anniversary this year, founders Judy and Ed Simpson reflect on the organization’s history in the latest issue of Pathlight.

In the cover story, the Simpsons talk about the founders’ goals: a network to educate patients about treatments and research, provide support, create relationships with physicians and eventually support research. In June, they hope to meet longtime PH thrivers and new members of the PH community at PHA 2026 International PH Conference and Scientific Sessions.

In another nod to PHA’s history, the new issue explores the evolution of patient education, with input from longtime thriver Gwendolyn Brown and Lana Melendres-Groves, MD, who chairs a PHA committee to assess patient education. What started with a mimeographed newsletter called Pathlight in 1990 has expanded to multimedia formats, international conferences and regional events.

Other highlights of this issue:

‘I Want To Help Folks Feel Empowered’

Support group leader April Van Hoose shares a first-person account of thriving with PH. Van Hoose, of Georgetown, Texas, was diagnosed with lupus 31 years ago and lupus-related PH in 2006. She discusses giving back, tough times, clinical trials and her love of video and role-playing games.

‘Advocating for Myself and Others’

Although Jeannie Kendrick says she can talk to a stranger wearing an oxygen cannula at a baseball game, she was uneasy about advocating in person at a government office. After a November 2025 visit to her senator’s district office, she felt a huge sense of accomplishment. Kendrick, a support group leader and longtime volunteer for PHA peer support programs, discusses the importance of speaking up for the Supplemental Oxygen Access Reform Act.

Moms Advocate for Kids’ Oxygen Access

Meg Casey and Lindsay Cipriani, both of Cincinnati, discuss their children’s challenges with supplemental oxygen access. As advocates for the SOAR Act and their children’s health, they met last fall with a legislative staffer for Rep. Greg Landsman (D-Ohio), along with Melissa Magness, a nurse practitioner specializing in pediatric cardiology at Cincinnati Children’s, and other parents, physicians and hospital staffers. Cipriani recently participated in PHA’s Hill Day.

PHA Registry: 4,000 Patients Strong

As the year began, all-time enrollment in the PHA registry reached more than 4,000 participants. “This milestone is a testament to the dedication of the staff in our accredited centers and the unfailing altruism of our PH patients,” says PHA board member Charlie Burger, MD.