Board of Trustees members may access their board packets, policies, bylaws and other documents by signing into their PHA account.

Board portal

Officers

Mitchell Koppelman, PhD

Chair

Caregiver
Retired VP, strategic planning, Minerals Technologies
Principal consultant, Mineral Solutions and Strategy

X

Mitchell Koppelman retired as vice president of strategic planning for Minerals Technologies in 2012. MTI, a $2 billion Fortune 1000 company headquartered in NYC, is a global leader in the manufacture and sale of mineral products and services. He was responsible for developing and executing MTI’s strategy, leading mergers and acquisitions, alliance and licensing activities, and providing leadership and oversight on strategic projects and technology initiatives.

Koppelman, along with his wife Debbie, lived in North Plainfield and later Seaside Park, New Jersey, where they were the proud parents of two daughters who passed away from pulmonary hypertension too soon. As Debbie courageously battles PAH that was diagnosed in 2012, she retired in 2017.

The Koppelmans relocate every fall to their dream home in Sanibel, Florida, to enjoy warm weather and closeness to nature. They return to Seaside Park every June to experience summer at the Jersey Shore.

Prior to his roles in corporate development and strategic planning, Koppelman led MTI’s global research and development and technical services (over 150 scientists and engineers) as vice president of R&D. He was North American business director (P&L responsibility) for MTI’s then largest business segment, Paper PCC. Mitchell began his career with MTI in 1990, when it was part of Pfizer, leading PCC marketing.

Before his 22 years at MTI, Koppelman worked for the Georgia Kaolin Company (now part of Imerys), a leading kaolin mineral mining and manufacturing company for 14 years.

Since retirement, Koppelman formed a consulting company, Mineral Solutions and Strategy, focused primarily on mineral and inorganic chemicals, where he provides consulting and advisory services to multi-national clients. He is involved in local government and planning in Sanibel and Seaside Park.

Koppelman received a B.S. in chemistry from the State University of New York at Stony Brook (1972) and a PhD in chemistry from Virginia Tech (surface chemistry of minerals, 1976). He has several mineral-related patents and has authored over 30 peer-reviewed technical publications and book chapters.

Koppelman continues to serve on the advisory boards of the Chemistry Department and College of Science at Virginia Tech and was inducted into their Hall of Distinction in 2025. Koppelman also is on the Committee of the Islands Board of Directors. The oversight committee protects the interests of residents and island visitors as intended in the 1975 Sanibel incorporation plan.

Koppelman began his fourth term on the PHA Board of Trustees in 2026 after serving as chair elect. He has headed the PHA Strategic Planning Committee since joining the board in 2015.

Diane Ramirez

Chair-Elect

PH advocate, transplant recipient
Lexington, North Carolina

X

In spring 2022, Diane Ramirez felt sicker and weaker than she’d been since her 1987 PH diagnosis. Her heart was failing, her oxygen needs were increasing, and she was taking the maximum doses of her PH medications. “I had days where I wasn’t doing anything, wearing 10-12 liters of oxygen, and I was still short of breath,” she says.

In September 2023, she underwent heart and lung transplant. “I may not have PH anymore, but I’m still here,” she says. “I still do advocacy and awareness for PH, and I have no intention of stopping.

Ramirez’ primary motivation to help the Pulmonary Hypertension Association with its mission comes from losing a brother and two sisters to pulmonary arterial hypertension. She wants to help as many patients as possible.

She has been involved with PHA advocacy and awareness since 2006 and has met with most of North Carolina’s delegation in the state and in Washington, D.C.

She has served on the PHA Board of Trustees for 14 years. She helped with the formation of the Pulmonary Hypertension Care Centers and the PHA Registry. She currently serves on the PHA Transplant Task Force, is a support group leader and serves on the Support Group Leader Advisory Board.

Mike Lentz

Treasurer

PH advocate, bereaved family member
Buncrana, County Donegal, Ireland and Louisville, Kentucky

X

Mike Lentz resides in Ponte Vedra Beach, Florida. He has two adult children, McKenzie and Connor, with his late wife, Maureen.

In June 2012, Maureen was diagnosed with PH, beginning Mike’s journey as a caregiver. He describes it as heartbreaking to adjust to their new reality and witness his once highly energized wife struggle to breathe. Sadly, Maureen passed away five years after her diagnosis.

To cope with his grief, Lentz became involved with PHA. He actively participated in the Jacksonville support group and attended PHA’s monthly bereavement calls.

Lentz has a long history of fundraising and donating to support PH-related causes. His goal is to help others fight PH, make strides toward finding a cure and continue to extend lives. He served on PHA’s Finance and Development committees before joining the board of trustees.

Lentz graduated from the University of Kentucky with a degree in architecture, and then moved to Jacksonville, Florida, to start work as a project manager at a small architectural firm. While there, he attended the University of North Florida to earn an additional degree in building construction.

Currently, Lentz is the managing director of the Jacksonville market for NELSON Worldwide, specializing in the design of large-scale, mixed-use developments throughout the United States.

In his spare time, Mike loves to play golf and travel to Ireland and around the United States to visit his children.

Nicole M. Creech

Secretary

PH patient, support group leader and patient advocate
Lexington, Kentucky

X

Nicole was diagnosed with pulmonary hypertension related to sickle cell anemia and sleep apnea in 2008 at age 36. 

In 2016, Creech became a member of the Pulmonary Hypertension Association and resolved to volunteer to help find a cure. She also wanted to be empowered by hope and share that hope with others. 

Creech currently serves as secretary of the board of trustees. She formerly chaired the Finance Committee and sits on several committees to provide a patient perspective. 

Creech served as co-chair of PHA’s International PH Conference and Scientific Sessions in 2024 and 2026. She led the pump therapy support group and was one of the first contestants in 2026’s “Hot Seat” video. 

In her spare time, Creech serves her community as an end-of-life doula.  She’s also a court-appointed child advocate and enjoys visiting assisted living facilities with her Morkie, Teddy.   

Creech also has been involved with local blood drives for the American Red Cross. 

Traci Stewart, RN, MSN, CHFN

Immediate Past Chair

PH nurse clinician, Heart and Vascular Center, Iowa Health Care

X

Traci Stewart works as a PH nurse clinician at the Iowa Health Care’s Heart and Vascular Center. She coordinates care as patients transition from the inpatient and outpatient settings. Stewart has over 20 years of clinical expertise in managing pulmonary hypertension and heart failure patients. Her focus is providing patient, nurse and community education.

She facilitates a regional PHA support group and organizes and presents education on PH/HF disease management to patients and healthcare providers in the community. She serves as a nurse leader by helping develop new treatment protocols, in-servicing staff nurses, and providing HF and PH education during nurse orientation.

She has been a member of the PH Professional Network since 2001 and has presented PH and HF disease management and education strategies. She is excited to collaborate with PHA to promote ongoing quality care and improved outcomes for the PH population.

Stewart is a past chair of the PHA Board of Trustees, past chair of PHPN Executive Committee and past co-chair for PHA’s 2016, 2018 and 2024 International PH Conference and Scientific Sessions Planning Committees.

Matt J. Granato LLM, MBA

President and CEO, Pulmonary Hypertension Association

Ex-Officio

Washington, DC

Matt Granato, LLM, MBA, of Washington, D.C., has been president and CEO of the Pulmonary Hypertension Association since January 2021.

Granato has more than 22 years of experience in nonprofit and health care associations. At PHA, Granato focuses on strategic leadership and financial acumen to propel the organization into 21st century best practices.

X

Matt Granato, LLM, MBA, of Washington, D.C., has been president and CEO of the Pulmonary Hypertension Association since January 2021.

Granato has more than 22 years of experience in nonprofit and health care associations. At PHA, Granato focuses on strategic leadership and financial acumen to propel the organization into 21st century best practices.

He has successfully navigated the COVID-19 pandemic, re-started in-person meetings and events to re-engage with patients and providers, and collaborated with all staff to re-define PHA’s work culture in a post-COVID world.

Prior to coming to PHA, Granato was CEO of an obstetrics medical society focused on high-risk pregnancies. During his tenure, Granato worked to grow the organization’s influence in the obstetric space to meet the needs of providers and their patients. His accomplishments included a new strategic plan that emphasized advocacy, research, and provider and patient education. As a result, the organization’s revenue doubled, and it gained increased resources for patients and specialists.

Under Granato’s leadership, the organization focused on diversity and inclusion to fill volunteer leadership and new professional staff positions. During his tenure, the organization’s membership grew by 52 percent through an improved member outreach and communications and acquisition strategy, which also led to record-breaking attendance at the organization’s 2019 annual scientific meeting.

Previously, Granato spent 13 years at a transfusion medicine trade association with U.S. and international institutional members, where he improved member services, marketing and revenue growth. Granato also worked in government relations, international law and human rights before dedicating his professional life to associations that enhance the careers and lives of members.

Granato has a bachelor’s degree in international relations, a master’s in law and a master’s in business administration.


Members At-Large

Allison Dsouza, BSN, RN, CCRN

PH patient

San Francisco

X

Allison Dsouza was diagnosed with pulmonary arterial hypertension in 2015. At the time, her pressures were the highest her PH Care Center had seen, and started on triple therapy, including subcutaneous medication. Since then, she has transitioned to a combination of inhaled and oral therapies. After repeat genetic testing, it was found that she has a gene associated with hereditary hemorrhagic telangiectasias and PAH. 

Dsouza’s experience as a patient inspired her to pursue nursing. She graduated summa cum laude from UCLA with a Bachelor of Science in Nursing in 2020. She worked on the adult lung transplant and advanced lung disease floor at UPMC Presbyterian and the pediatric cardiac ICU at UPMC Children’s Hospital. She now works in the pediatric cardiac ICU at UCSF Benioff Children’s Hospital, where she works directly with the team that provided her care after her diagnosis. 

Dsouza’s involvement with PHA began with the O2breathe fundraising walks, support groups and conferences. She is a moderator for the Generation Hope Facebook group and a PHA peer mentor. 

Jessie Dunne, PharmD, BCPS, BCCP, FACC

PHPN Chair-Elect

Clinical Pharmacist at Oregon Health and Science University
Portland

X

Jessie Dunne joins the board as chair elect of the PHPN Executive Committee. She is a clinical pharmacist for advanced heart failure and transplant at Oregon Health and Science University.  

She also is the PGY-2 ambulatory care residency coordinator. Dunne was the first co-chair of the PHPN Education Committee. Nationally, Dunne is a fellow of the American College of Cardiology and a member of the ACC Cardiovascular Team Pharmacist Workgroup. 

Mardi Gomberg-Maitland, MD, MSc

SLC Chair

Medical director, PH Program
George Washington University
Washington, D.C.

X

Mardi Gomberg-Maitland is an endowed professor of medicine/Walter G. Ross Professor of Clinical Research at George Washington University School of Medicine and Health Sciences and director of the PH program.  

She is an expert clinician scientist in pulmonary heart disease and has participated in dozens of multicenter, multinational research trials, developing new therapies for PH. Her research focuses on understanding the epidemiology of PH and development of new therapeutics and biomarkers.  

As chair of the Scientific Leadership Council, Gomberg will provide medical and scientific guidance and support to PHA. 

Dan Grinnan, MD

Accreditation and Registry Committee Chair

Medical director, PH Care Center, VCU Medical Center
Richmond, Virginia

X

Dan Grinnan joins the board as chair of the Accreditation and Registry Committee. He is medical director of the PHA-accredited PH Care Center at VCU Medical Center in Richmond, Virginia. He is member of PHA’s Scientific Leadership Council and the PH Care Center Communications Committee, and he chairs the PH Care Center Review Committee. He previously was chair of the PHA Registry Committee.

Marcie McGregor

Patient

Warrenville, South Carolina 

X

When Marcie McGregor was diagnosed with PH in 2012, her doctor told her that the PHA website was the only place he wanted her to look for information. She followed his direction and found information about treatment and financial assistance. She says she wouldn’t be able to afford her PH treatments without the information on PHA’s website. 

To show her appreciation, McGregor became a PHA volunteer and donor. By being involved, she helps herself and others. She chooses to look at her PH diagnosis as a blessing. PH has taught her not to take a single day for granted. She is most thankful that PH hasn’t robbed her of seeing her beautiful granddaughters and grandson, whom she calls the lights of her life that keep her going. 

As a longtime PHA volunteer, McGregor has served on PHA’s Membership Committee and Support Group Leadership Advisory Board. In 2015 she founded a PHA support group in Augusta, Georgia, serves as a PHA Peer Mentor. She says her proudest accomplishment was creating a coloring book to help kids with PH feel a little less alone and more understood. 

Debra Hines-Bruce, MHS, M.Ed

PH patient

Dallas

X

Debra Hines-Bruce was diagnosed with idiopathic pulmonary arterial hypertension in 2015. In 2016, I attended my first PHA International PH Conference and Scientific Sessions. The life-changing experience offered education, empowerment and a strong sense of community. Since then, she has become deeply committed to advocacy and support within the PH community.

Hines-Bruce leads PHA’s Dallas Support Group with her husband Gary, who also lives with PH. Together, they strive to create a welcoming, informative and encouraging space for individuals and families navigating this journey. Hines-Bruce also serves on PHA’s Support Group Leadership Advisory Board, where she collaborates with others to enhance the reach and effectiveness of support services for patients nationwide.

“We have a beautiful blended family that includes three daughters, one son, six wonderful grandchildren and one precious great-granddaughter,” Hines-Bruce says. “Our family is a constant source of joy, strength, and support, and we are grateful for the love and connection we share across generations.”

Living with PH has its challenges, but it has also given me purpose and a platform to uplift others on a similar path.

Tisha Kivett, RN, BSN, AMB-BC

PHPN Chair 

Pediatric PH coordinator 

X

Tisha Kivett is the pediatric PH coordinator at Riley Children’s Health. She has been an active member of the PH Professional Network since 2016, most recently serving as chair-elect of PHPN.  

Kivett also leads the Indianapolis Pediatric PH Support Group and co-leads the Indianapolis PH Support Group. As chair of PHPN, Kivett will help PHA advocate for the PH community and improve quality patient care through education, networking and mentoring for patients and health care providers. 

Michelle Ferdinand Liu, MD, MPH, FAAOA

Parent of child with double lung transplant, support group leader

Clinical director, ENT Allergy Otolaryngology Associates
Fairfax, Virginia

X

Michelle Ferdinand Liu received her medical degree from the Warren Alpert Medical School of Brown University in Providence, Rhode Island. She obtained her Master’s Degree at the T.H. Chan School of Public Health at Harvard University.

She served in the U.S. Navy Medical Corps for 21 years and is now a private practice otolaryngology head and neck surgeon in Fairfax, Virginia. Liu serves on the PHA Board of Trustees and the Executive Committee of the American Academy of Otolaryngology Head and Neck Surgery’s Board of Governors.

Liu is a wife and mother of three children, Ezra, Esther and Ezekiel. While stationed in Naples, Italy, in 2012, she and her husband Moses were devastated when Esther suffered a cardiac arrest due to undiagnosed idiopathic pulmonary arterial hypertension. Fortunately, Esther received tremendous acute care in the Netherlands followed by a speedy return to the United States.

Liu has been a dedicated caregiver for Esther, now 12 years post double lung transplant (2014). She continues to advocate for children with PH and their families as leader of the Mid-Atlantic Pediatric Pulmonary Hypertension Support Group.

She enjoys sharing her perspective about thriving with a PH child and advocates for lung transplant as a surgical option for children with severe refractory pulmonary arterial hypertension.

Mitzi McIver-LaBarge

Parent of a child with PH

X

Mitzi McIver Barge is a retired certified medical assistant in adult cardiology. When her daughter was diagnosed in 2007, PHA became an invaluable resource to her family. Since then, McIver-LaBarge has been active in fundraising, support groups and helping parents at PHA conferences.

McIver-LaBarge’s experience with her daughter’s PH inspired her to help other parents navigate their PH journeys. She volunteers as a PHA peer mentor and manages the PHA Facebook group for parents of children with PH. “It’s important for parents to know they are not alone. I, along with others, are here to help.”

Mike Naple

Public affairs and communications strategist

Arc Initiatives
Washington, D.C.

X

Mike was diagnosed with PH in 2016, but also lives with interstitial lung disease, sleep apnea, scoliosis and a stutter. Mike has been a strong advocate for himself and the broader PH community for close to a decade.

Through PHA, Mike has written multiple articles for Pathlight, participated in an advocacy training webinar and sat for a video interview at Conference to discuss advocacy and storytelling. Mike writes a semi-regular column for BioNews’ Pulmonary Hypertension News where he covers topics related to chronic illness, queer and disabled identities, advocacy and, of course, PH.

Mike still works full-time as a public affairs and communications strategist at Arc Initiatives. He has extensive experience helping federal and state-level elected representatives, public interest and advocacy organizations, and government officials craft their messages, develop narratives and enact public policy. Before joining Arc Initiatives, Mike served in the Obama administration as a communications director at the U.S. Department of Health and Human Services. There, he supervised public affairs strategies related to mental health, refugee services and healthcare for Native Americans and Alaska Natives.

He began his career in California state government as a gubernatorial press aide and spokesperson. Mike holds a master’s degree in media and public affairs from The George Washington University and dual bachelor’s degrees in cinema-television and international relations from the University of Southern California.

Mike currently lives in Washington, D.C., with his partner TJ.

George Peoples, MD, FACS

Parent of a child with PH

Executive Medical Director, Oncology Center of Excellence, Avance Clinical
San Antonio, Texas

X

George Peoples served 30 years of active duty as a military surgeon and research scientist. He joined PHA five years ago after his daughter was diagnosed with PH. As a PHA volunteer, he has participated in fundraising and national meetings and served as an adviser about the PHA Registry, clinical trials and industry engagement.

While practicing as a military surgical oncologist, Peoples created the Cancer Vaccine Development Program to discover, develop and test cancer vaccines.

After he retired as a colonel, he founded LumaBridge (formerly Cancer Insight), an oncology-focused clinical research organization that merged with Avance Clinical, a global CRO. Today, he is executive medical director of the Oncology Center of Excellence at Avance.

Jody Petry, CPA

Parent of child with PH, PH patient

Director, Assurance Services
Germantown, Wisconsin

X

Petry, her husband Mike and their two children, Collin and Taryn, live in Germantown, Wisconsin.  At the age of one, Taryn had multiple syncope epsisodes that caused her to be hospitalized, however no conclusive cause was identified. It wasn’t until 2009, Taryn, then 5, was diagnosed with idiopathic pulmonary arterial hypertension.  

Four years later, Petry was diagnosed with PH at age 44 after noticing increasing shortness of breath with exercise. She is involved in the PH community, participating in local support groups and attending the PHA fundraising walks. 

Taryn has been on IV therapy for the past 10 years and attends college and works part time. Petry continues to work full-time, thanks to a supportive employer and flexible work arrangement. Outside of work, she enjoys dog training, strength training and cycling with the assistance of an electric pedal assist bicycle. 

Petry is a technical director for CLA, a professional services firm, specializing in nonprofit audit and attest services. As part of the national assurance technical team, she assists teams with research into complex accounting and auditing questions and risk assessment of audit clients. She also conducts quality control reviews before issuance for nonprofit engagements.  

Petry has a BBA in accounting from Western Michigan University and has worked in public accounting since graduating and earning her CPA license. 

Kelly Wiegele

Parent of child with PH

Cincinnati

X

Kelly Wiegele moderates two Pulmonary Hypertension Association social media support groups. She helps other families develop support systems to get through their PH journeys and find the best care possible.

Wiegele’s daughter Riley was diagnosed with idiopathic pulmonary arterial hypertension at age 4. Her PAH later was found to be related to hereditary hemorrhagic telangiectasia. Riley has been on several treatments, including subcutaneous, IV and oral medications.

As a family, the Wiegeles strive to provide as much support to other families going through the PH journey, mostly through social media. The PH team at Cincinnati Children’s Hospital often refers the Wiegeles to other families looking for support. Additionally, Riley has raised money to buy dry suits for other children with PH, as well to buy toys and gift cards for the Cardiology Child Life Department at Cincinnati Children’s.

In her current role as a private contractor for Lockheed Martin, Wiegele works with $50 million-plus contracts. She previously worked in procurement at Lockheed Martin for 13 years. She has a Bachelor of Science in criminal justice and a Bachelor of Science in corrections from Eastern Kentucky University.

R.J. White, MD, PhD 

SLC Chair-Elect

Director, PAH program, University of Rochester Medical Center
New York

X

Jim White joins the board as chair elect of the Scientific Leadership Committee. White is the founding director of the pulmonary arterial hypertension program at the University of Rochester Medical Center, a PHA-accredited Comprehensive Care Center.  

He has been the principal investigator for the university’s Phase 2 and 3 research programs with his partner, Daniel Lachant. White is a member of the PHA’s Scientific Leadership Council.  

White is a longtime volunteer for PHA and regularly presents at PHA conferences, workshops and the PH Professional Network Symposium. 

Delphine Yung, MD

Professor, Pediatric Cardiology, University of Washington School of Medicine

Director, Pediatric Pulmonary Hypertension Comprehensive Care Center, Seattle Children’s Hospital

X

Delphine Yung is attending cardiologist at Seattle Children’s Hospital and professor of pediatrics of the University of Washington School of Medicine. She cares for children in the Seattle Children’s Heart Center and has been involved in PHA for many years.  

Yung has served on the Scientific Leadership Council, the Pulmonary Hypertension Care Center Board of Directors (now PHA Registry Publications and Presentations Committee), the Nominations and Governance Committee, and the Education and Support Implementation Committee. 

Yung received her MD from Stanford University. She completed an internship and junior residency in pediatrics at Children’s Hospital Boston, a senior residency in pediatrics at Lucile Packard Children’s Hospital at Stanford and a pediatric cardiology fellowship at Children’s Hospital of New York, Columbia University. 


Members Emeriti

C. Gregory Elliott, MD

Immediate past chair

Department of Medicine, Intermountain Medical Center
Chair, Graduate Medical Education Committee, Intermountain Healthcare
Professor of medicine, University of Utah School of Medicine
Murray, Utah

X

Greg Elliott, MD is Professor of Medicine at the University of Utah School of Medicine and Chairman of the Department of Medicine at Intermountain Medical Center. Dr. Elliott is a graduate of Brown University, and he earned his MD at the University of Maryland. Dr. Elliott completed his residency and Chief Residency in Medicine at the University of Maryland Hospital followed by pulmonary and critical care fellowship training at the University of Utah Affiliated Hospitals.

During his fellowship Dr. Elliott began to focus his research efforts on understanding and treating pulmonary hypertension. He was invited to serve as a principal investigator for the first registry of patients diagnosed with primary pulmonary hypertension, sponsored by the National Institutes of Health (1983-1987). Dr. Elliott established the first Pulmonary Hypertension Center in the Intermountain West to provide advanced care for patients with pulmonary hypertension and to advance understanding of pulmonary hypertension. Dr. Elliott’s center was among the first in the United States to treat pulmonary hypertension with Flolan and to care for patients after heart and lung transplantation or pulmonary thromboendarterectomy. Dr. Elliott’s center also was a major contributor to the REVEAL registry (2006-2009); and to the discovery of gene mutations which cause heritable forms of pulmonary hypertension.

Dr. Elliott has served the Pulmonary Hypertension Association (PHA) since 1994 when he organized the collection of DNA samples in a “research room” at the first national meeting of the PHA. He subsequently served as chair of the PHA’s Scientific Leadership Council. In this role he organized the first Scientific Program to be held at a PHA international meeting. He also served on the PHA Board of Trustees where he advocated for earlier diagnosis of pulmonary hypertension in an era of effective treatments. Dr. Elliott attended every national/international meeting of the Pulmonary Hypertension Association; and, most recently, he chaired the Research Portfolio Working Group whose charge was to outline future research portfolio options for the PHA Board of Trustees.

Michael McGoon, MD

Professor of medicine (emeritus), Mayo Clinic

Rochester, Minnesota

X

Dr. Mike McGoon is a retired consultant in the Division of Cardiovascular Diseases and Professor Emeritus of Medicine at the Mayo Clinic. He did medical school and residency at Johns Hopkins and has been on staff at Mayo since 1983. He has cared for patients with PH since 1982 and started Mayo’s PH Clinic in 1996.

Dr. McGoon has a long history with the Pulmonary Hypertension Association. He served as Chair of the Scientific Leadership Council from 2002-2004, Chair of the Board of Trustees from 2006-2008, and Chair of the PHCC Oversight Committee from 2013-2016. Dr. McGoon has seats on both the Development and Strategic Planning Committees.

He lives in Rochester, MN with his wife Bonnie. His three daughters live in Phoenix (plus 2 grandchildren), Minneapolis (plus 3 grandchildren) and Eugene, OR and his son lives in Rochester.

Ed Simpson, DEd

Professor emeritus, College of Education at Northern Illinois University

Holiday Island, Arkansas

X

Ed Simpson has been a part of PHA since its inception. He is a co-founder of the United Patients Association for Pulmonary Hypertension (later to become the Pulmonary Hypertension Association).
Ed was co-chair and the designer/planner of the first two International PH Conferences in 1994 and 1996, both held in Stone Mountain, Georgia. Ed also was the grant writer and chair of the first Pulmonary Hypertension Association Leadership Conference held in Chicago, Illinois in June 1997. He served as vice president of PHA from 1996 to 1997 and as president in 1999. Ed has also served on the Board of Directors for the National Organization for Rare Disorders (NORD) in Fairfield, Connecticut, from 1994 to 1999.

Ed taught in public schools for 10 years before joining the teaching faculty at Northern Illinois University. He is now professor emeritus.

Judith Simpson, RN, EdS

Pediatric nursing instructor (retired)
PHA co-founder

Holiday Island, Arkansas

X

Judy Simpson is the founding President of United Patients Association for Pulmonary Hypertension (later to become the Pulmonary Hypertension Association) and along with her husband Ed, has been a part of PHA from the beginning. Judy was one of the original “kitchen table” founders of PHA with her sister and fellow emeritus Board member, Pat Paton who has had PH since 1987.

Judy was a Treatment Investigation New Drug Advisory Committee member for Burroughs Wellcome Company as patient advocate and testified before the Senate Judiciary Committee on the need for research for rare disorders. She was a member of the National Institutes of Health, Heart, Lung and Blood Institute Advisory Council as a patient advocate from 1996-2000. She represented PHA serving as a founding member and Chair of the American Thoracic Society Public Advisory Roundtable. Judy relates that, “PHA has set a new paradigm in the way a patient organization collaborates with physicians, researchers, pharmaceuticals, home health agencies, government, and medical societies, making us a model many support groups now are following.”

Judy lives in Holiday Island, Arkansas, with her husband Ed. Judy was a nurse for 53 years and taught pediatric nursing at Kishwaukee Community College in Malta, Illinois; she is now retired.