To commemorate its 25th anniversary in 2016, the Pulmonary Hypertension Association (PHA) announced the Periwinkle Pioneers, individuals and groups responsible for advancing care for pulmonary hypertension (PH) patients and helping to change the history of this disease.
PHA opened its Periwinkle Pioneers selection to the public in October 2015 with the expectation that its judging committee would select 25 winners. However, because so many have given so much to this organization, the final list of Periwinkle Pioneers represents 25 individual and group category winners.
Become a part of PHA history by becoming a member or supporting us with a donation in honor of a Periwinkle Pioneer or someone you love.
1-14. Individual Honorees
15. Early Global Leaders
The global PH network has grown from one national association in 1991 to three in 1996 to 70 today. These are some of the early leaders who made that possible.
16. Early Medical Transformation
The following individuals are Periwinkle Pioneers who represent PHA’s Early Medical Transformation.
17. Scientific Leadership Council
In 1992, PHA established its Scientific Advisory Board, now the Scientific Leadership Council (SLC), with 28 global leaders in the field of pulmonary hypertension. Coordinating the medical arm of PHA, the SLC provides medical and scientific leadership and guidance and oversees the development of all PHA’s medical programming. SLC members proactively facilitate the development of new knowledge about PH, develop educational resources for medical and public audiences and advocate to raise awareness about the disease. The current SLC leaders, our Periwinkle Pioneers, represent all those who have served on the SLC over the years.
18. PH Care Centers and PHA Registry
By 2011, while there were many experts in the field, there were many more doctors who saw only two or three patients and were not connected to rapidly developing research. PHA’s Scientific Leadership Council decided that an accreditation program for PH Centers was an essential next step to improve quality of care for patients. Dr. Murali Chakinala led the effort to build the PH Care Centers (PHCC) program. In the first year he appointed three active committees, chaired by Dr. Ron Oudiz, Dr. Joel Wirth, Abby Poms, BS, RRT, and Dr. Roham Zamanian. Since the program began accepting applications at the end of September 2014, teams of more than 60 reviewers have been visiting applicant centers, with 29 having completed the accreditation process and many more in the queue for review.
As the PHCC effort advanced, it became clear that an essential element needed to be added. Data needed to be collected from accredited centers to inform what works for patients and what doesn’t. Dr. Chakinala invited Dr. Steven Kawut to chair the PHCC’s fourth committee to create a new PHA Registry (PHAR), slated for a 2016 rollout.
The following individuals are PHA’s Periwinkle Pioneers — representing PHA’s PHCC and PHAR group — an important part of PHA’s history, present and future.
19. PH Professional Network Founders and Chairs
In 1999, a small group of nurses and other non-MD medical professionals formed an organization within PHA to add their voice and talents to a growing PHA community. Gathering at PHA’s 2000 International Conference, 80 of these medical professionals formed the PH Professional Network (PHPN), which convenes formally every other year. These PHPN founders and chairs are Periwinkle Pioneers, representing more than 1,400 PHPN members who support PHA’s mission.
20. Board Leadership
PHA is directed by a dedicated and passionate group of people who have been touched by pulmonary hypertension. Board members have been and are patients, family members of PH patients, and medical professionals specializing in the disease. These Periwinkle Pioneers represent the many Board members who have built and unified the community during the past 25 years.
21. Early PHA Leaders
As PHA evolved, many patients, caregivers, volunteers and medical professionals committed time and treasure to grow PHA. Among them are these early leaders, selected by the community as Periwinkle Pioneers.
For patients with PH, awareness is a life or death matter. PHA is committed to raising awareness about the disease so that patients are diagnosed early and accurately sooner rather than later. Among the thousands of PHA community members who have raised awareness about the disease are these Periwinkle Pioneers, whose efforts to raise awareness about PH have been extraordinary.
23. PH Medical Trio
As individuals and as a research trio, Robyn Barst, MD, Stuart Rich, MD, and Lewis Rubin, MD, accelerated the growth of the PH field through their many research papers and their service to PHA, where they donated time and treasure to advance PH scientific research. Dr. Barst also led in the development of the field of pediatric pulmonary hypertension.
24. PH Genetic Researchers
Among the scientists advancing PH education are those who have expanded knowledge related to the genetic basis of some forms of PH. These genetic researchers are Periwinkle Pioneers.
25. PHA Superstar Support Group Leaders/Volunteers
Central to PHA’s growth are its support groups, which offer a welcoming place for patients to connect with one another. Over the years, a number of support group leaders and other PHA volunteers have provided inspiration, empowering hope through sharing, caring and advocating through awareness. Among them – and representing an extraordinary group who lead more than 245 PHA support groups – are these Periwinkle Pioneers.