PHA BOARD OF TRUSTEES
PHA is governed by a diverse group of dedicated and passionate volunteers who have all been touched by pulmonary hypertension. Our Board of Trustees is made up of people with PH, family members and medical professionals specializing in the disease who serve without compensation.
Officers
Colleen Brunetti, M.Ed., C.H.C.
Chair
Owner, ColleenBrunetti.com
West Hartford, Connecticut
Colleen Brunetti, M.Ed., C.H.C., Chair
Owner, ColleenBrunetti.com
West Hartford, Conn.
Colleen Brunetti was diagnosed with PH on January 2, 2008 after a trip to the emergency room for unrelated symptoms. Since then, she has been under the care of a PH Specialist and on a variety of treatments. Colleen lives in in Connecticut with her husband and their two children.
Colleen’s view on PH is two-fold. The first is to choose to live life fully and purposefully, despite illness and possible limitations. Second, she believes that if there is an expectation of a cure, the individual members of the PH community must have an active hand and voice in making that happen.
To that end, Colleen has dedicated as much as she can to PHA. Besides serving on the Board, she helped co-found Generation Hope, has worked on several fundraisers, spoken at PHA events round the country, testified to the FDA and Congressional representatives, made several media appearances, and published a book to help others learn to thrive, not just survive, no matter the diagnosis. (See book HERE)
Professionally, Colleen started her career as a teacher, but PH forced her to leave the field shortly after diagnosis. Since that time, she has worked to re-define her professional life with writing, speaking, and health coaching.
Karen Fagan, M.D.
Immediate Past Chair
Associate Professor and Chief of Pulmonary and Critical Care Medicine
University of South Alabama
Mobile, Alabama
Karen Fagan A. Fagan, M.D., Immediate Past Chair
Professor of Internal Medicine and Pharmacology
Chief of Pulmonary and Critical Care Medicine
University of South Alabama
SLC Immediate Past-Chair
Mobile, Ala.
Dr. Fagan is presently a Professor of Medicine and Pharmacology, Chief of the Division of Pulmonary and Critical Care Medicine, and Director of the Pulmonary Hypertension Center at the University of South Alabama in Mobile, Ala. She earned her Bachelors and MD degrees from the University of California at San Diego. She then completed Internship and Residency at the University of Texas Southwestern Medical School Parkland Memorial Hospital. She then completed fellowship training in Pulmonary and Critical Care Medicine at the University of Colorado in Denver where she stayed on as faculty for 19 years before moving to the University of South Alabama
Dr. Fagan has been involved with PHA for the past 10 years and serving on the Scientific Leadership Council for the past 6 years. While on the SLC she has served on the research committee, on the editorial board of Advances in Pulmonary Hypertension, and chair of the 2008 Scientific Sessions of the International Conference. She is presently a member of PH Clinicians and Researchers and the Chair-elect of the Scientific Leadership Council.
Dr. Fagan has also participated in other international organizations including the American Thoracic Society where she has served as the Program Committee Chair for the Pulmonary Circulation Assembly and as a Council member on the American Heart Association’s Council on Perioperative and Critical Care. She was on the future therapeutics task force at the 2008 Dana Point PH World Congress. She has served on many grant review panels including the NIH, AHA, ATS, and private foundations and pharmaceutical industries. She has also twice chaired the Grover Conference on the Pulmonary Circulation.
Her professional focus is to advance the scientific understanding and treatment of pulmonary arterial hypertension. She has had active research funding for both basic science and clinical/translational research in PAH as well as directing the only PH center in the Northern Gulf Coast.
She lives in Spanish Fort, Alabama with her twin daughters.
Dr. Fagan currently serves as the Chair on PHA’s Board of Trustees, and serves on the Finance and Audit Committee.
Tony Lahnston
Treasurer & Chair-Elect
Bereaved Family Member
Banker and Manufacturing Executive
Windemere, Florida
Tony Lahnston, Treasurer
Bereaved Family Member
Banker and Manufacturing Executive
After graduating from Boston University and attending Oxford University, Tony Lahnston began his career as a commercial banker in the Boston area. He spent eight years in small business and middle market lending for Bank of New England and Community National Bank, leaving that career in 1995 as a Vice President of Commercial Lending.
Tony then embarked on 20+ years as a manufacturing executive managing everything from small $10 million family-owned businesses up to $700 million international companies in the food industry. He is currently the President of Curaleaf in Maryland.
In September 2007, Tony’s niece, Marchelle Corbett passed away from complications related to pulmonary veno-occlusive disease (PVOD), a rare form of PH. During her final days in the hospital in Portland, Maine, Tony stayed in a local hotel and found a flier for a Pulmonary Hypertension Association golf tournament fundraiser put on by a local support group. Upon his return home, Tony pulled out that flier, visited the PHA website for the first time and discovered a great way to keep the memory of Marchelle alive.
After setting up a fundraising website, Tony reached out to friends, family, business associates and running buddies and quickly raised over $30,000! Tony was invited to attend the 2008 PHA Conference and Scientific Sessions in Houston and was overwhelmed with the welcome from PHA and the wonderful patient community.
Tony previously served on the PHA Board of Trustees for nine years and is now coming back after a long-deserved break. He has also participated on numerous PHA committees including the Governance, Development and Investment committees as well as the Finance and Audit Committee, where he served as Chair and assumed the role of Treasurer in 2014.
Tony resides in Windermere, Florida, with his wife Ruth. His two daughters, Abigail and Victoria, graduated from Windermere Preparatory School with International Baccalaureate diplomas and now attend the University of Florida.
Nicole M. Creech
Secretary
PH Patient, Support Group Leader and Patient Advocate
Lexington, Kentucky
Nicole M. Creech, Secretary
PH Patient, Support Group Leader and Patient Advocate
Lexington, KY
Nicole was diagnosed with pulmonary hypertension (PH) due to sickle cell anemia in 2008 at age 36. She continued to work in her long-time career of property management for another three years after diagnosis then opted for early retirement after realizing she would not be able to keep up with the vigorous demands of the industry. In 2016, Nicole became a member of the Pulmonary Hypertension Association (PHA) and resolved to volunteer in an effort to help find a cure and to continue to be empowered by hope and to share that hope with others.
Nicole currently leads a support group in Lexington, Kentucky, where she resides with her Yorkshire terrier, Jager. She is in her second term as a Support Group Leader Advisory Board member and she is a patient representative on the PHA Registry (PHAR) Steering Committee. Nicole is also a member of PHA’s Legacy of Hope Society.
Nicole has served on several panels for patient-led sessions at PHA’s International Conference and Scientific Sessions in Dallas (2016) and Orlando, Florida (2018) as well as PHA on the Road – Pittsburgh. Nicole moderated the Journey’s Luncheon at Conference in Orlando and has been a speaker at employee training programs for specialty pharmacy, Humana in Cincinnati. In addition to joining the PHA Board of Trustees, she continues to assist PHA with the support group leader mentorship program and regional support group leader trainings.
Nicole was featured as a PH patient spotlight in PHA’s quarterly publication, Pathlight, (September 2018) and has completed an editorial piece for the Gill Heart and Vascular Institute at the University of KY, UK Healthcare (May 2019). She is also the administrator for two PH-related Facebook groups, and is currently working on a blog project.
Members At-Large
Cheri Abbott, RN, CCRP
Pulmonary Hypertension Professional Network, Chair-Elect
Research Nurse
University of Colorado, Anschutz Medical Campus
Brighton, Colorado
Cheri Abbott, RN, CCRP
Pulmonary Hypertension Professional Network, Chair-Elect
Research Nurse
University of Colorado, Anschutz Medical Campus
Brighton, CO
Cheri Abbott, RN, CCRP is a Research Nurse at University of Colorado, Anschutz Medical Campus. As registered nurse for over 30 years and a seasoned research coordinator with more than 11 years of clinical trial management, Cheri has extensive experience with direct management of over 30 studies including multi-site projects, investigator-initiated projects, NIH studies and industry phase II, III and IV trials. In her career she has contributed towards several peer-reviewed publications.
Cheri has been a member of the PH Professional Network (PHPN) publications committee since 2010 and the PHPN Communications Chair since 2015. She is currently the PHPN, Chair-Elect. Additionally, she has been a member of the Society of Clinical Research Associates (SOCRA) since 2011 and currently serves as the Chair of the Rocky Mountain Chapter.
Frank Cann
Executive Vice President and Chief Operating Officer
F.H. CANN & ASSOCIATES
North Andover, Massachusetts
Frank Cann
Executive Vice President and Chief Operating Officer
F.H. CANN & ASSOCIATES
North Andover, Mass.
Frank Cann is owner of Coffee Cann Café in Lawrence, Mass. and F. H. Cann & Associates, Inc of North Andover. When he learned his daughter’s fiancé, Ernesto Benscome, was diagnosed with pulmonary hypertension (PH), he decided the best way to conquer the overwhelming and helpless feelings was to fight back.
Cann’s research about the disease led him to the Pulmonary Hypertension Association (PHA). He formed a volunteer advocacy group called Team Cann-Do Phighters. Cann and his wife, Sheri, their daughter, Kara, and soon-to-be son-in-law, along with their son, Justin recruited close family and friends and members of Bencosme’s care team at Boston’s Brigham and Women’s Hospital to send emails and make phone calls to their members of Congress. The team urged their representatives to cosponsor H.R. 3520, the Pulmonary Hypertension Research and Diagnosis Act. After receiving one of the calls, local Representative Diana DiZoglio drafted a similarly worded state-level bill, H 4120, requiring the Commonwealth to establish a PH task force to monitor and report on advances in research, transplantation, public awareness, health care delivery and improvements in early and accurate diagnosis.
Along with continuing the push for legislative support, Cann hosted a month-long “Coffee Cann” fundraiser at his coffee shop, which pulled in more than $600. It was enough inspiration for him to say “yes” when PHA asked him to chair the inaugural Boston PHA O2 breathe walk. His team raised $11,000.
Soon after the Boston PHA O2 breathe walk, Benscome and Cann’s daughter became husband and wife. Cann furthered his commitment as well by accepting an invitation in 2017 to join PHA’s Board of Trustees. The appointment came on the heels of Massachusetts Governor Charlie Baker signing into law the first-ever PH bill. Cann serves as one of the inaugural task force members.
Murali M. Chakinala, M.D., FCCP
Scientific Leadership Council, Chair
Professor of Medicine, Division of Pulmonary and Critical Care
Washington University School of Medicine
St. Louis, Missouri
Murali Chakinala, MD, FCCP
Scientific Leadership Council, Chair-Elect
Professor of Medicine, Division of Pulmonary and Critical Care
Washington University School of Medicine
St. Louis, MO
Dr. Murali Chakinala received his undergraduate education at Duke University and then received his medical degree at Vanderbilt University School of Medicine. He completed an Internal Medicine Residency at the University of Texas – Southwestern, and also served as a Chief Resident. He finished his Pulmonary and Critical Care training at Washington University in 2002 and then joined the faculty. He is board certified in Internal Medicine, Pulmonary Medicine, and Critical Care Medicine. He is a Professor in the Department of Internal Medicine and is director of the Pulmonary Hypertension Care Center and co-director of the Hereditary Hemorrhagic Telangectasia (HHT) Center at Washington University. He is a member of the Scientific Leadership Council of the Pulmonary Hypertension Association, chair of Pulmonary Hypertension Care Centers Oversight Committee, and member of the CureHHT’s Global Research Medical Advisory Board. His interests include clinical management and clinical research in the areas of pulmonary hypertension, pulmonary arterio-venous malformations, pulmonary thrombo-embolic diseases, and end-stage lung diseases.
Colleen Connor
PH Patient
West Chester, Pennsylvania
Colleen Connor
PH Patient
West Chester, PA
Colleen lives in West Chester, PA with her husband Shawn and two children, Ryan and Keira. In 2005 she realized she had trouble breathing and sought medical attention. Her diagnosis of pulmonary hypertension came more than two years later. Colleen was a long time employee of SAP America and served as a Project Manager and then Vice President of Sales in various North American and Global capacities. Two years after diagnosis, she needed to depart the fast pace position that she loved to better care for her health in the midst of a PH decline.
Upon diagnosis she relied heavily on PHA’s Doctor Directory and Survival Guide to find appropriate care and navigate the uncertainties of PH. She was relieved to be connected with others through support groups, online discussion forums, and the biennial International PH Conference. She regularly attends the Penn Presbyterian Medical Center support group and has had the opportunity to become friends with many local patients and their families. She credits the knowledge and support PHA provided through its resources and programs as lifelines during the most vulnerable of times.
Colleen and her family chair the biennial Philadelphia’s Hope for a Cure PHA Gala which raises funds for PHA programming and research. She has supported advocacy initiatives including securing and maintaining a partnership with Senator Casey, PHA’s first sponsor to introducing a PH Bill into the Senate. She has participated as panelist with the FDA, and she actively participates in PH medical studies at the National Institute of Health and the University of Pennsylvania.
Colleen serves on the PHA Board of Trustees, and has a seat on the Development Committee and the Strategic Planning Committee.
Ramona Doyle, M.D.
Clinical Professor of Medicine
Pulmonary Hypertension Clinic, UCSF
San Francisco, California
Ramona Doyle, MD, MSc
Ramona Doyle, M.D.
Clinical Professor of Medicine
Pulmonary Hypertension Clinic, UCSF
San Francisco, CA
Currently Dr. Doyle is Clinical Professor of Medicine at UCSF where she works as an attending physician in the Adult Pulmonary Hypertension Clinic at Parnassus as well as in the Adult PH Clinic at Zuckerberg San Francisco General Hospital. Dr. Doyle also works as a consultant with business, academic, government and non-profit entities to promote the advancement of innovative science and therapies in the service of patients with serious illnesses. Most recently Dr. Doyle was Chief Medical Officer at Blade Therapeutics where she developed and lead the translational and clinical strategy for the company in diseases involving fibrosis. Prior to Blade she served as VP of Therapeutics at the California Institute of Regenerative Medicine (CIRM), a state agency, where she lead a team of 6 senior science officers working to advance stem cell-based therapies across multiple therapeutic areas. Dr. Doyle was a Senior Group Medical Director in Respiratory and Allergic Diseases at Genentech where she built and directed a team of clinical scientists and physicians in the US, the UK and China and helped get the first biologic medicine approved for a severe, debilitating skin condition. Prior to Genentech she worked at Gilead where she was responsible for the program in pulmonary hypertension.
Before working in biotech Dr. Doyle was a full-time faculty member at Stanford University for 12 years where she was the Medical Director of the Lung and Heart-Lung Transplantation Program and founded the PH program. Much of her professional career has been spent working with patients with PH as well as with those with other advanced heart and lung diseases. She has served on the United Network for Organ Sharing (UNOS) Ethics Committee, and the Board of the American Lung Association, California Chapter. During her time at Stanford a generous donation from an anonymous family affected by PH led to the establishment of The Vera Moulton Wall Center for Pulmonary Vascular Disease, a center for research, education and clinical care of adults and children, which she Co-Directed. Dr. Doyle received her M.D. degree at Emory University in Atlanta, GA and trained in Internal Medicine and Pulmonary and Critical Care Medicine at UCSF.
Dr. Doyle served on the Scientific Leadership Council of the PHA in the past and is currently serving on the PHA Board of Trustees, and has a seat on the Development Committee.
Anna Ryan Hemnes, M.D.
Scientific Leadership Council, Chair-Elect
Associate Professor of Medicine
Vanderbilt University
Nashville, Tennessee
Anna Hemnes, M.D.
Anna Hemnes, M.D., is a translational physician-scientist who researches the role of altered metabolism in pulmonary vascular disease. She treats patients at the Vanderbilt Center for Pulmonary Vascular Disease in Nashville, Tennessee and directs clinical studies of pulmonary hypertension treatment, diagnostic modalities in pulmonary vascular disease and new pulmonary vascular disease classifications.
Dr. Hemnes and her research group study the effect of BMPR2 mutation on insulin-mediated intracellular signaling in the pulmonary vasculature and the right ventricle. Her clinical research interests include the role of insulin resistance and metabolic syndrome in human pulmonary vascular disease.
Her interest in deep molecular phenotyping of pulmonary vascular disease led to work that demonstrated a molecular signature of vasodilator-responsive pulmonary arterial hypertension. Her publication of the study was among the earliest to show the feasibility of precision medicine for an ultra-rare pulmonary vascular disease. Her lab now investigates new blood-based omic predictive strategies for FDA-approved therapies for pulmonary arterial hypertension. She is involved in efforts to bring precision medicine techniques to pulmonary vascular disease.
Dr. Hemnes received her medical degree from Johns Hopkins University in Baltimore, where she completed a fellowship, internship and residency. She also completed a fellowship in pulmonary vascular disease at Vanderbilt University Medical Center.
William A. Hoff
Lewisville, Texas
William A. Hoff
Lewisville, TX
William (“Bill”) Hoff is a retired accountant, most recently serving as the Corporate Controller for the Heidelberg Cement Group’s North American Operations (“Heidelberg”). Bill worked for Heidelberg and predecessor companies for 38 years in various Finance roles, including responsibility for financial statements and financial integration resulting from mergers and acquisitions. Bill began his career with the accounting firm Arthur Andersen after graduating from West Virginia University in 1960. He also completed an accelerated management program at Harvard University in the mid 1970s.
In addition, Bill represented his local community on the Southern Lehigh School District Board of Education for six years. He held the positions of Treasurer, Vice President and President throughout his tenure on the Board. Subsequent to this, Bill was appointed by the Board as Chairman of the Southern Lehigh Union School Authority and served for thirteen years.
Bill served PHA for the last 12 years on the Finance Committee, beginning after the death of his wife Vivian. Vivian passed away from pulmonary hypertension in January of 2006. It was Vivian who encouraged Bill to participate in PHA, initially through volunteerism in a local support group. In addition to his recent election to the PHA Board of Trustees, Bill was named Chairman of the Finance Committee and will also assume the position of Treasurer for the Organization.
Bill currently lives near Dallas, Texas with his wife Patti. He has two children with his first wife and two grandchildren.
Kimberly Jackson
Registered Nurse Coordinator
Pulmonary Hypertension Clinic
University of Kentucky, Lexington
Kimberly Jackson, R.N., B.S.N.
Kimberly Jackson is the nurse cardiovascular coordinator at the University of Kentucky’s Gill Heart and Vascular Institute Pulmonary Hypertension Clinic in Lexington.
As the nurse coordinator, Kim develops policies and procedures to assure patients have quality resources and expert care. She educates patients and staff about disease state and therapies and serves as a liaison between patients and specialty pharmacies, pharmaceutical companies and insurance companies.
Kim has been working primarily with pulmonary hypertension (PH) patients since 2010 when she started working at Gill. Previously, she was nursing services supervisor at Kentucky Cardiology. She started her career as a bedside nurse
She is dedicated to compassionate nursing care, education and advocacy. She aims to provide a high level of care to her patients and improve their quality of life.
Kim is chair-elect of the Pulmonary Hypertension Association (PHA) PH Professional Network Committee and immediate past chair of PHPN’s Education Committee. She is the PHPN liaison to PHA’s Scientific Leadership Committee.
She has a Bachelor of Science in nursing from Indiana Wesleyan University and an associate’s degree in registered nursing from Eastern Kentucky University.
William Jansen
Managing Director
Commonfund
New Canaan, Connecticut
William Jansen
Bill Jansen is a member of the Commonfund business development team. He is responsible for developing asset management and private market mandates across endowments, foundations, healthcare organizations, family offices, insurance companies and pensions.
He joined the Pulmonary Hypertension Association (PHA) Board of Trustees as a way to serve people with seriousness illnesses.
“In 2012, my family suffered a devastating setback with the sudden loss of our 24-year old son Robert. I’ve grown increasingly sensitized to, and empathetic for, others who have contracted or experienced deep loss or acute illness. Many people helped my family weather the emotional storm. Some even remain supportive today. I hope my efforts at PHA can help pay forward that same support.”
Prior to his current role, Bill was a senior member of Commonfund’s hedge fund team, sharing responsibility for investment strategy and leading business development and investor relations. Before joining Commonfund’s hedge fund group, Bill was managing director of Commonfund Securities, where he was responsible for developing and servicing institutional mandates for charitable organizations.
Before joining Commonfund, Bill spent three years with Credit Suisse Asset Management and Natwest Global Financial Markets, working with public plans and multinational corporations to design and execute customized investment strategies.
Previous experience includes direct investing in foreign exchange, fixed income and global equity markets through management of treasury and proprietary trading platforms at British Petroleum of America and Discount Corporation of New York.
Bill has a Bachelor of Arts degree from St. Lawrence University and a Master of Arts degree from the Columbia University Graduate School of International and Public Affairs. He is a Chartered Financial Analyst (CFA) Charterholder.
Mitchell Koppelman
Retired VP Strategic Planning Minerals Technologies Inc.
Principle Consultant – Mineral Solutions & Strategy
North Plainfield, New Jersey
Mitchell Koppelman
Principle Consultant Mineral Solutions & Strategy
North Plainfield, NJ
Mitchell Koppelman retired as Vice President of Strategic Planning for Minerals Technologies Inc. (MTI) in 2012. MTI, a $2 billion Fortune 1000 company headquartered in NYC. MTI is a global leader in the manufacture and sale of mineral products and services for the Paper, Steel, Building Products, Glass Consumer and Healthcare, Environmental and Oil and Gas Services. As the founder of a Corporate Development function, and then as head of Strategic Planning, Dr. Koppelman was responsible for developing and executing MTI’s strategy, leading Mergers & Acquisition, alliance and licensing activities and providing leadership and oversight on strategic projects and technology initiatives at both corporate and business unit levels.
Prior to his roles in Corporate Development and Strategic Planning, Dr. Koppelman led MTI’s Global Research & Development, and Technical services (over 150 scientists and engineers) as VP R&D and was North American Business Director (P&L responsibility) for MTI’s largest business segment, Paper PCC. Mitchell began his career with MTI in 1990, when it was part of Pfizer, leading PCC marketing.
Dr. Koppelman had been with MTI for over 22 years before accepting retirement in 2012, after working for the Georgia Kaolin Company (now part of Imerys), a leading kaolin mineral mining and manufacturing company for 14 years.
Since retirement, Dr. Koppelman formed a consulting company, Mineral Solutions & Strategy, focused primarily on mineral and inorganic chemicals, and continues to provide consulting and advisory services to multi-national clients.
Mitch, along with his wife Debbie, resided in North Plainfield NJ, where they were the proud parents of two daughters, both who passed away way from Pulmonary Hypertension too soon. As Debbie herself courageously battles PAH, she too retired in 2017 and both relocated to their dream retirement home by the water in Seaside Park NJ.
Dr. Koppelman received a BS in Chemistry the State University of New York at Stony Brook (1972) and a Ph.D. from Virginia Tech in Chemistry (Surface Chemistry of Minerals, 1976). He has several mineral related patents, and has authored over 30, peered reviewed technical publications and book chapters.
Dr. Koppelman continues to serve on the Advisory Boards of the Chemistry Department and College of Science at Virginia Tech.
Dr. Koppelman is currently serving a second term on the PHA Board of Trustees, has a seat on the PHA Finance Committee and is Chair of the PHA Strategic Planning Committee.
Ronald J. Oudiz, MD
Scientific Leadership Council, Immediate Past Chair
Professor of Medicine
Director, Liu Center for Pulmonary Hypertension
LA Biomedical Research Institute at Harbor – UCLA Medical Center
Torrance, California
Ronald J. Oudiz, MD
Scientific Leadership Council, Chair
Professor of Medicine at the David Geffen School of Medicine at UCLA,
Director of the Liu Center for Pulmonary Hypertension,
and Clinical Director of the Wasserman Cardiopulmonary Exercise Laboratory at Harbor-UCLA Medical Center in Torrance, Calif
Ronald J. Oudiz, MD is Professor of Medicine at the David Geffen School of Medicine at UCLA, Director of the Liu Center for Pulmonary Hypertension, and Clinical Director of the Wasserman Cardiopulmonary Exercise Laboratory at Harbor-UCLA Medical Center in Torrance, Calif. He was introduced to PH by Bruce Brundage, MD, in the early 1990s and owes the success of the Harbor-UCLA PH Clinic to Bruce, as well as to his caring and giving coordinators and nurses, Joy, Germaine, Ruth and the late Daisy. He “volunteered” to be the medical editor of the Survival Guide and shares in the pride of contributing to this work. Ron’s beautiful wife and two wonderful children keep him going as chapters keep rolling in for review. In 2011, PHA awarded him with the Physician of the Year Award, and in 2015 he received the 2015 Legacy Award from PHA for his contributions to the pulmonary hypertension field.
Monica Penaranda
Patient, PH Advocate
Hacienda Heights, California
Monica Penaranda
Hacienda Heights, CA
Monica Penaranda was diagnosed with pulmonary arterial hypertension at age 16 when her pregnancy magnified her atrial septal defect (ASD), a congenital defect in the upper chamber of her heart. At the time, pulmonary hypertension (PH) was not a well-known disease but she was lucky that her doctor had recently attended a workshop on PH. At a time when only one medication existed for PH, doctors were able to save her life, but were not able to save her baby.
In the 25 years since her diagnosis, Monica has participated in clinical trials and has been treated intravenously with a variety of drugs to dilate her lung vessels. She is currently in a clinical trial with the first implantable pump to treat PH.
Monica became active with Pulmonary Hypertension Association when she realized “I could be giving hope to others.” She is active in fundraising, support groups and advocacy efforts. She is a support group leader for the Greater Los Angeles Support Group and she worked with the PH community to organize All Hearts on Deck PHor a Cure. She recently took part in a PHA advocacy event on Capitol Hill, where she met with Rep. Jim Banks (R-IN) and Rep. Jillian Gilchrest of Connecticut, among others.
Monica and her husband Brandon live in Hacienda Heights, California, with their daughter, Bryce, 22 and son, Bear, 13.
Traci Stewart, RN, MSN, CHFN
PH Nurse Coordinator – Heart and Vascular Center, University of Iowa
Iowa City, Iowa
Traci Stewart, RN, MSN, CHFN
PH Nurse Coordinator – Heart and Vascular Center, University of Iowa
Iowa City, Iowa
Traci Stewart, RN works as a PH Nurse Coordinator – Heart and Vascular Center, University of Iowa. She coordinates patient care as patients transition from the inpatient and outpatient settings. Traci has over twenty years of clinical expertise in management of pulmonary hypertension (PH) and heart failure (HF) 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 within the University of Iowa by being actively involved in development of 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 (PHPN) 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. Traci is a past Chair of the PHPN Executive committee and past Co-Chair for PHA’s 2016 and 2018 PH International Conference and Scientific Sessions Planning Committee.
Doug Taylor
Support Group Leader, PH Patient / Patient Advocate, and Retired Architect
Lexington, South Carolina
Doug Taylor
Support Group Leader, PH Patient / Patient Advocate, and Retired Architect
Lexington, South Carolina
Like most patients, Doug Taylor’s journey with pulmonary hypertension began a few years before he was actually diagnosed. By early 2003 it was obvious that the problem was more serious than the asthma diagnosed by his primary care physician.
May 2003, Doug volunteered for an EKG to help out medical students and the results led his primary care physician to revise the diagnosis to suspected pulmonary arterial hypertension. The battery of tests that followed, including a right heart catheterization, confirmed idiopathic pulmonary arterial hypertension. He was told that he probably had less than 3 years to live.
Now a long-term survivor, Doug has been active with the Pulmonary Hypertension Association since 2007 when he took over as leader of the South Carolina PH support group, the Midlands SC Palmetto PHriends.
Doug sits on several of PHA’s Advisory Boards including the: Newly Diagnosed Advisory Board; Advocacy Advisory Board; PHA PHriends Advisory Board; and, Men Living with PH Advisory Board
He has been active with PHA’s International Conference and Scientific Sessions first as a panelist in 2008, then on the Conference Planning Committee (2010, 2012, 2014, 2016). Doug currently serves as Co-Chair of the Conference Committee for 2018, and has a seat on the Governance Committee.
According to Doug, the best thing about pulmonary hypertension is the people you meet along the way – other patients, caregivers, healthcare providers, PHA staff, and pharmaceutical reps. They all come together to make our community the special environment that it is.
He encourages himself and other PH patients with two messages:
Never give up HOPE, and
Celebrate each day!
Matt Wall
Parent of Child with PH, PH Advocate
Commercial Construction Manager
Burlington, North Carolina
Matt Wall
Commercial Construction Manager
Burlington, N.C.
Matt lives in Burlington, North Carolina with his wife Jayna, and two sons, Jackson and Jayden. At 14 months old, Jackson Wall was diagnosed with Idiopathic Pulmonary Arterial Hypertension and has been on subcutaneous treatment since he was 19 months old. As a family, the Walls organize and participate in fundraising and awareness raising activities including radiothon interviews, multiple Miracle Hospital campaigns representing Duke Children’s Hospital, and multiple local fundraisers. Matt and Jayna organize an annual golf tournament, Driving “Fore” a Cure for PH, and have raised over $235,000 for pediatric pulmonary hypertension research.
Matt is the Raleigh-Durham Special Services Group (SSG) leader for DPR Construction, where he leads nearly $70 million of interior commercial construction projects in the Raleigh-Durham area. Matt has led the efforts of building out over 2 million square feet of commercial office space in Raleigh totaling more than $300 million. Prior to DPR Construction, Matt was a project manager with Duke Realty in Raleigh. Matt graduated with a B.S. in Construction Management from Western Carolina University in 2006.
Jessie Kohler Wenninger, Esq
Attorney
Panish Shea & Boyle LLP
Santa Monica, California
Jessie A. Kohler Winninger, Esq
Attorney
Panish Shea & Boyle LLP
Santa Monica, Calif.
Jessie began her journey with pulmonary arterial hypertension in 2004 when she was diagnosed after becoming increasingly short of breath. Since then, she has been an active supporter of PHA. Recognizing the importance of her own early diagnosis and the excellent care she received from nearby PH programs, Jessie has been working to raise funds for the Pulmonary Hypertension Care Center initiative since 2012.
Jessie is an attorney at Panish Shea & Boyle LLP where she is also responsible for the overall management of the firm. Prior to joining Panish Shea & Boyle LLP, Jessie was a partner at the international law firm of Winston & Strawn LLP where she specialized in labor and employment law. Jessie received a B.A. in Law and Society, magna cum laude, from the University of California, Santa Barbara and her J.D. from the University of Southern California Law Center. In addition to the Board of PHA, where she serves as Chair of the Governance Committee and she has a seat on the Conference Committee. Jessie serves on the Board of Directors of Public Counsel, the largest pro bono law firm in the nation.
Jessie lives in Santa Monica, California with her husband, Rick and her children, Ella and Jack.
Melisa Wilson, ARNP
PH Program Coordinator, Florida Hospital Orlando
Orlando, Florida
Melisa Wilson, ARNP
PH Program Coordinator, Florida Hospital Orlando
Orlando, Fla.
Scientific Leadership Council Representative
Melisa Wilson, MSN, ACNP, ARNP-BC is the Pulmonary Hypertension Program Coordinator for Florida Hospital Orlando, now known as Advent Health, where she involved in both outpatient and inpatient clinical practice, research, staff development, policy and procedure writing, and patient teaching. She has 12 years of experience in cardiology and pulmonary vascular disease. She is the past chairs of the Pulmonary Hypertension Professional Network symposium committee and the Pulmonary Hypertension Professional Network. She is also involved with the Orlando Pulmonary Hypertension Association (PHA) support group. Melisa previously served on the Pulmonary Hypertension Comprehensive Care Oversight Committee and the PHA Scientific Leadership Council. Mrs. Wilson has presented on various topics related to pulmonary hypertension at numerous national conferences including the American College of Cardiology, NACE, the American Academy of Heart Failure Nurses Advance Heart Failure Conference, and multiple Pulmonary Hypertension Association and Pulmonary Hypertension Professional Network Symposiums.
Melisa is pursuing a doctoral of nurse practice from Duke University. She received her Bachelor’s degree in Exercise and Sport Science with a minor in Health Science Education from the University of Florida in 1999. She received her Bachelor’s degree in Nursing from the Florida State University in December of 2003. She worked as a registered nurse in an emergency department at Tallahassee Memorial Hospital while pursuing her Master’s degree in Nursing from the University of Florida in December 2005. Melisa has served as adjunct faculty at Florida State University where she did evaluations for advance practice nursing students in the central Florida region. Melisa is a licensed Acute Care Nurse Practitioner and is nationally certified through the American Nurses Credential Center.
Ex-Officio
Matt J. Granato
President & CEO, Pulmonary Hypertension Association
Silver Spring, Maryland
Matt J. Granato
President & CEO, PHA
Silver Spring, Md.
Matt has more than 20 years of experience in nonprofit and health care associations. Before his leadership role at PHA, Matt was CEO of an obstetrics medical society focused on high-risk pregnancies. During his tenure, Matt worked to increase 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. He doubled the organization’s revenue, increased resources for patients and specialists, and focused on diversity and inclusion to fill volunteer leadership opportunities and new professional staff positions. Matt also has experience in member services, marketing, and program and service expansions from his 13-year tenure at a transfusion medicine trade association. Matt worked in government relations, international law and human rights before dedicating his professional life to nonprofit associations. Matt has a bachelor’s in international relations, a master’s in law and a master’s in business administration.
Members Emeriti
C. Gregory Elliott, M.D.
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
C. Gregory Elliott, M.D.
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, UT
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
Michael McGoon, M.D.
Professor of Medicine (Emeritus), Mayo Clinic
Rochester, Minn.
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
Professor Emeritus, College of Education at Northern Illinois University
Holiday Island, Arkansas
Ed Simpson, D.Ed.
Professor Emeritus, College of Education at Northern Illinois University
Holiday Island, Ark.
Board Emeritus
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
Judith Simpson, RN, EdS
Pediatric nursing instructor (retired)
Holiday Island, Ark.
Board Emeritus
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.” J
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.
Honorary
Carl Hicks
Former PHA Board Member (2002-2012) and Board Chair (2008-2010)
Carl Hicks
Former PHA Board Member (2002 – 2012) and Board Chair (2008 – 2010)
Carl Hicks retired from his position as executive vice president at PHA in November 2016. Prior to becoming a member of PHA staff, Carl served on the PHA Board of Trustees from 2002 – 2012, and served on every committee, as well as leading the board as chair during his tenure as a trustee.
A beloved member of the community and tireless advocate for PHA, Carl lost his daughter, Meaghan to PH while serving as board chair. Upon his retirement and in recognition of his dedicated service, Carl was honored as the first and currently only honorary lifetime member of the PHA Board of Trustees.
After his service with PHA, Carl joined industry where he serves as vice-president for patient advocacy and community support at SteadyMed Therapeutics.