Pulmonary Hypertension Association (PHA) Names ‘Periwinkle Pioneers’: Honor Recognizes 25 Years of Pulmonary Hypertension (PH) Advancements

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Pulmonary Hypertension Association names Periwinkle Pioneers, individuals and groups responsible for advancing PH care during the association's 25-year history

In honor of Pulmonary Hypertension Awareness Month, the Pulmonary Hypertension Association (PHA) announces the nation’s Periwinkle Pioneers, individuals and groups responsible for advancing care for pulmonary hypertension (PH) patients and helping to change the history of this disease. The Periwinkle Pioneers, nominated by the public, will receive special recognition throughout 2016 as part of PHA’s 25th anniversary celebrations.

Pulmonary hypertension (PH), which some people call “the other high blood pressure,” is increased blood pressure in the blood vessels of the lungs that puts pressure on the right side of the heart and can lead to death from heart failure. Periwinkle, symbolic of the color of the lips of some PH patients when they are oxygen deficient, has come to represent hope and courage for patients, caregivers and PH healthcare professionals.

“In a little more than two decades, working with amazing patients, caregivers, clinicians, researchers, fundraisers and volunteers, PHA has made great progress in advancing patient care, public awareness and PH research,” said PHA President and CEO Rino Aldrighetti. “The Periwinkle Pioneers are among so many PH heroes, those responsible for PHA’s success. Since PHA’s founding, the number of FDA-approved PH treatments has grown from 0 to 13; donors have provided more than $17 million in research commitments for PHA research programs; and more than two dozen Pulmonary Hypertension Care Centers have undergone and completed PHA’s new accreditation process.”

PHA recently launched #Heart2CurePH, a global public awareness campaign, as the need for educating people about PH remains one of the greatest challenges in combating the disease. The average survival time for PH patients who go without treatment is 2.8 years. Because symptoms include breathlessness, fatigue, and chest pain, many patients receive a misdiagnosis, believing they have asthma or other less threatening illnesses before they learn they have PH.

PHA opened its Periwinkle Pioneers selection to the public in October with the expectation that its judging committee would select 25 winners. However, the decision was a lot more difficult than anticipated. As a result, the final 25 Periwinkle Pioneers represent individual and group category winners. Committee members all said this was one of the most difficult tasks they’ve undertaken because so many have given so much to this organization. PHA will highlight the selected Periwinkle Pioneers on PHAssociation.org.

Pulmonary Hypertension Association’s Periwinkle Pioneers (alphabetically)
1. Rino Aldrighetti: PHA's first employee and first CEO. (Aldrighetti asked that, as a staff person, he not be named, but judges insisted.) Aldrighetti has defined the staff’s role with these words, “Any person whose life is touched by PH has the right to fight back as much or as little as health and interest allow. PHA staff is responsible to make that possible.”
2. Gail Boyer Hayes: PH patient; created Pulmonary Hypertension: A Patient’s Survival Guide, writing the first three editions. In the opening of the Survival Guide, Gail wrote, “The formation of PHA may be the first time that patients, doctors, and researchers joined together in a synergistic swarm to learn so much so fast…Although PHA now has a permanent office and professional staff, patients remain the beating heart of the organization.”
3. Bruce Brundage, MD: First physician to sit on PHA's Board of Trustees and first physician to serve as its chair. He has been quoted as saying, “When we can get medical professionals together to meet and plan face to face, then we will begin a whole new level of progress.”
4. Bonnie Dukart: Diagnosed shortly after graduating from Cornell University; organized the first Pennsylvania support group and served as PHA's second Board president. Dukart once said, “I lived without speaking about this disease for 10 years. I travelled over 700 miles from my home to the closest support group. When I walked in the door and, for the first time, met seven other patients, my life changed.”
5. Alfred Fishman, MD: Played a key role in establishing the first national pulmonary hypertension registry and engaging other physicians in the then-small field.
6. Teresa Knazik: A PHA co-founder and patient and the first editor of Pathlight, PHA’s quarterly magazine.
7. Sally Maddox: 25-year PH survivor who joined the PHA Board of Trustees in 1998. As PHA’s education chair, Sally created PHANews, serving as editor for its early years. During a Board meeting when there were not yet treatments to extend life, she said, “I don’t know if this decision will help me, but I believe it will help the next generation of patients. We should do it.”
8. Michael McGoon, MD: Organized the PH Center at the Mayo Clinic and, as an early leader in clinical research for PH, Dr. McGoon worked on trials for virtually all of the PH drug treatments. His early efforts conceived of PHA’s first medical education programs and he has served as PHA Board Chair and Chair of the organization’s Scientific Leadership Council.
9. Dorothy Olson: PH patient and one of PHA’s four "kitchen table" co-founders, she lived more than 35 years with the disease. Olson, who lost her sight during her battle against PH, once said, “I may not be able to see any more but I can still dial a phone. Use me to help patients.”
10. Jerry Paton: A PHA co-founder who, as volunteer finance officer, ensured that limited resources could be invested in creating programs.
11. Pat Paton, RN: A PH patient and PHA co-founder who hosted others at her kitchen table to start what grew to become the world’s largest national PH association; coordinated the association’s first Patient-to-Patient Telephone Support Line and many other PHA programs. Paton called the first 300 members of the organization, weaving them together into a strong organization. She once said, “It’s always important for us to remember we’re here to serve and to build a strong community rather than our own egos.”
12. Ed Simpson: Co-founder who in January 1992 at PHA’s first annual meeting (10 people attending and $838.51 in the treasury) proposed that PHA organize the world’s first International PH Conference. That meeting has since become the largest PH meeting in the world. Simpson once said, “PHA should be willing to take large risks for the chance to make big change for the better.”
13. Judy Simpson, RN, EDS: Pat Paton's sister, a teaching nurse, played the lead role in early and successful efforts to engage medical professionals in PHA. She helped organize PHA’s Scientific Advisory Board, now Scientific Leadership Council. Simpson was the founding president of PHA’s Board of Trustees.
14. Barbara Smith: Smith represents all the quiet leaders who have done so much to build PHA’s fight against pulmonary hypertension. In the association’s early years, Barbara set aside a room in her family's Florida plumbing business and recruited family volunteers to help fill orders from patients and families for brochures and Pulmonary Hypertension: A Patient's Survival Guide, covering all the postage. She once said, “I lost my sister and best friend to this disease. I lost my daughter to this disease. Now, I have this disease. I don’t know why I’m still here if it’s not to help other patients.”

15. PHA 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.

  • Iain Armstrong, RN: United Kingdom
  • Sharon Chetty: South Africa
  • Migdalia Denis: Latin America/Venezuela
  • Pisana Ferrari; Europe/Italy
  • Gerry Fischer: Europe/Austria
  • Juan Fuertes: Europe/Spain
  • Melanie Gallant-Dewavrin: France
  • Bruno Kopp: Germany
  • Noriko Murakami: Japan
  • Tomas Pulido, MD; Mexico
  • Annie Whitaker: Australia
  • Kay Yeowart, MBE: United Kingdom
  • Jing Zhi-Cheng, MD: China
  • Julio Sandoval, MD: Mexico

16. PHA’s Early Medical Transformation Pioneers

  • David Badesch, MD: Dr. Badesch, who today leads the PH Center at the University of Colorado, was one of the early physicians to see the possibilities of PHA as a vehicle to create greater value for patients through partnerships between medical professionals and patients and their caregivers.
  • C. Gregory Elliott, MD: In 1994, several weeks before PHA's First International Conference, Dr. Elliott, a PH-treating pulmonologist at the University of Utah with an interest in genetics, contacted PHA and asked if he could draw blood during the International Conference. He has described that first Conference blood draw as an opportunity to collect more blood from patients than he could have achieved in 10 years at his center. The benefits included discovery of the first gene related to PH.
  • Vallerie McLaughlin, MD: In 2003, Dr. McLaughlin became the second editor of PHA's medical journal, Advances in Pulmonary Hypertension, and helped PHA develop programs that have made PHA the premiere provider of PH education in the U.S.
  • Victor Tapson, MD: Dr. Tapson was the first editor of PHA’s medical journal, Advances in Pulmonary Hypertension. Dr. Tapson has served on PHA’s Scientific Leadership Council and was a pioneer in PHA’s tradition of community, where clinicians work directly with support groups.
  • Carol Vreim, PhD: Dr. Vreim managed the National Institutes of Health Registry when it started in 1980 and continued to lead it for the full five years of its existence. Under her leadership, the registry evolved and connected many of the physicians who would soon play a major role in developing PH as a major medical field of interest.

17. PHA Scientific Leadership Council
In 1992, PHA established its Scientific Advisory Board, now the Scientific Leadership Council (SLC), 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.

  • Richard Channick, MD
  • Karen Fagan, MD
  • Erika Berman Rosenzweig, MD

18. Pulmonary Hypertension Care Centers and Pulmonary Hypertension Association 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 SLC 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 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 PH Care Centers (PHCCs) 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 PHAR and PHCC group -- an important part of PHA’s history, present and future.

  • Murali Chakinala, MD
  • Steven Kawut, MD
  • Ron Oudiz, MD
  • Abby Poms, BS, RRT
  • Joel Wirth, MD
  • Roham Zamanian, MD

19. Pulmonary Hypertension 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.

  • Cheri Abbott, RN, CCRP
  • Joy Beckman, RN, MSN
  • Michelle Cash, MSN, RN, APRN
  • Louise Durst, RN
  • Traci Housten, RN, MS
  • Amy Kimber, RN, APNP
  • Martha Kingman, FNP-C, DNP
  • Natalie Kitterman, BSN, RN, CCRP
  • Fran Rogers, CRNP, MSN
  • Arlene Schiro, RN, MA, ACNP
  • Traci Stewart, RN, MSN, CHFN
  • Cathy Severson, RN, BSN
  • Crystal Weber, RN
  • Melisa Wilson, ARNP, ACNP-BC

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:

  • Colleen Brunetti
  • Carl Hicks
  • Roger Towle
  • Steve White, PhD

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.

  • Candi Bleifer
  • Linda Carr
  • Shirley Craig
  • Laura D'Anna
  • Jim Wilson
  • Betty Lou Wojciechowski

22. Awareness
For patients with PH, awareness is a life or death matter. As such, 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.

  • Kevin Burger
  • Tom Linnen
  • Diane Ramirez

23. PH Medical Trio
As individuals and 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.

  • Robyn Barst, MD
  • Stuart Rich, MD
  • Lewis Rubin, MD

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.

  • James Lloyd, MD
  • Jane Morse, MD
  • John Newman, MD
  • Richard Trembath, MD

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.

  • Ann Arnott
  • Evelyn Crespo
  • Diane Dauwalder
  • Angie Eldam
  • Kim Ford
  • Amanda Harvey–McKee
  • Julie Hendry
  • Steph Layer
  • Bonnie McGoon
  • Linda Pall
  • Rick and Delores Peacy
  • Merle Reeseman
  • Joanne Sperando-Schmidt
  • Jack Stibbs & Family
  • Doug Taylor

About the Pulmonary Hypertension Association Headquartered in Silver Spring, Md., with a growing list of chapters across the country, the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension organization. Its mission is to extend and improve the lives of those affected by PH; its vision is a world without PH, empowered by hope. PHA achieves this by connecting and working together with the entire PH community of patients, families and medical professionals. Among its programs, PHA facilitates more than 245 support groups around the country and delivers continuing education for medical professionals through PHA Online University. For 12 consecutive years, PHA has received the highest rating — four stars — for fiscal accountability and transparency from Charity Navigator, placing it in the top half of one percent of all rated charities. For more information, please go to http://www.PHAssociation.org, @PHAssociation on Twitter or http://www.facebook.com/PulmonaryHypertensionAssociation.

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