PHA BOARD OF TRUSTEES
The Pulmonary Hypertension Association is directed by a dedicated and passionate group of people who have been touched by pulmonary hypertension. Our Board of Trustees consists of patients, family members of PH patients and medical professionals specializing in the disease.
Officers
Roger Towle
Chair
Vice President for Financial Affairs, Grove City College
Grove City, Penn.
Roger Towle, Chair
Roger Towle, Chair
Vice President for Financial Affairs, Grove City College
Grove City, Penn.
Roger Towle is Vice President for Financial Affairs at Grove City College. Roger lives in Grove City, Pennsylvania with his wife, Deb. Their daughter, Jocelyn, was diagnosed with PPH in May of 2002 at the age of 23.
Roger is a CPA and spent most of his career in public accounting. He was an audit partner with Deloitte & Touche prior to changing careers in the early 1990s and returning to Grove City College, his alma mater, in 1995.
Before volunteering to work with PHA, Roger spent many years, in various capacities, as a volunteer for the American Diabetes Association and served as its national treasurer from 1994-1997.
He currently serves as Chair on PHA’s Board.
Karen Fagan, MD
Chair-Elect
Associate Professor and Chief of Pulmonary and Critical Care Medicine University of South Alabama
Mobile, Ala.
Karen Fagan, MD, Chair-Elect
Karen Fagan, MD
Professor of 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-Elect on PHA’s Board of Trustees, and serves on the Finance and Audit Committee.
Tony Lahnston
Treasurer
Director of Operations, Tropical Nut and Fruit
Windermere, Fl.
Tony Lahnston, Treasurer
Tony Lahnston
Director of Operations, Tropical Nut and Fruit
Windermere, Fl.
Tony Lahnston’s niece, Marchelle Corbett was diagnosed with PH in April of 2007 and passed away in September of 2007. The loss of his sister’s only child was devastating to the entire family. Tony was very close to his niece and her passing cemented his commitment to PHA.
Tony is the Director of Operations for Tropical Nut and Fruit based in Orlando, Florida. During his career he has served as the President and COO of privately owned companies in Massachusetts and Florida as well as a Vice President of Commercial Banking.
As Treasurer of the Board, Tony serves as Chair of PHA’s Finance and Audit Committee and has a seat on the Executive Committee and the Governance Committee. He holds a bachelors degree from Boston University, and lives in Windermere, Florida with his wife Ruth and two daughters, Abigail and Victoria.
Stephen L. White
Immediate Past Chair
Retired Episcopal Priest
Williamstown, Mass.
Stephen L. White, PhD, Immediate Past-Chair
Stephen L. White, PhD
Episcopal Priest
Williamstown, Mass.
Dr. Steve White is a priest of the Episcopal Church. Steve and his wife Andrea, a speech-language pathologist, and their son Aidan live in Hancock, Massachusetts in the Berkshire Hills. Steve helps Andrea manage her private practice at Berkshire Speech & Language Institute. The White family lost daughter Christen to PH in 2002 when she was nearly 23.
Steve served as Episcopal chaplain at Princeton University from 2000 to 2008. He currently serves a parish as an interim pastor and provides spiritual mentoring to students at Yale Divinity School. Prior to entering the ordained ministry in 1997 Steve worked in various capacities in the not-for-profit and for-profit sectors of the health care field including hospital administration, managed psychiatric care, teaching and health services research at the University of South Florida College of Public Health, and developing health promotion services and hospital consulting services as a Vice President at Johnson & Johnson Health Care Systems. Steve was also a co-founder of two start-up software companies: Preferred Systems (acquired by Computer Associates) and Bowstreet (acquired by IBM).
Steve received a BA degree in psychology from Southern Connecticut State University, an MSW in clinical social work from Smith College School for Social Work, an MPA in health care management from Golden Gate University, and an M.Div. from The General Theological Seminary. Steve also holds a Ph.D. in health economics and management from The Heller School at Brandeis University and an honorary doctor of humane letters degree from Cuttington University College in Liberia, West Africa.
Steve is the Immediate Past-Chair of the Board of Trustees. Blending his personal and professional experience, Steve has been involved with helping PHA support groups deal with grieving and spirituality. He also has a seat on the Development Committee, the Investment Committee, and is active as a lobbyist for PHA on Capitol Hill.
Sally Maddox
Secretary
Math teacher
Rome, Ga.
Sally Maddox, Secretary
Sally Maddox, Secretary
Math teacher
Rome, Georgia
Sally Maddox is a math teacher at an alternative school and has been a PH patient for over 20 years. She lives in Rome, GA and she has been the leader of the Georgia Support group since 1997. She organizes the annual GA Fun Walk for a Cure each October to raise money for PH research and patient services. She has served as PHA’s Vice President of Education, as well as on the Conference Planning Committee since 2002. Sally is also the editor of PHANews, PHA’s weekly internet information resource for patients and caregivers.
Sally is also involved as a volunteer for the Community Emergency Response Team and the local Crisis Pregnancy Center in Rome. She’s married to Shelby, a member of the Army Reserve who just returned from a tour in Iraq. She is helping to raise his son, Brandon, a freshman in college. Sally graduated with her Master’s and specialist degrees in Secondary Mathematics Education from the University of West Georgia. She is starting her Doctorate in Leadership for Learning with a Mathematics Concentration this year at Kennesaw State University.
Sally was first elected to the Board of Trustees in 1999. She took a brief break from the Board in 2009 and was re-elected again in January 2010 and 2013. She is currently the Secretary of the Board of Trustees, and serves on the Conference Committee.
Members At-Large
Erika Berman Rosenzweig, MD
Associate Professor of Clinical Pediatrics in Medicine Columbia Presbyterian Medical Center
Scientific Leadership Council Chair
New York, N.Y.
Dr. Erika Berman Rosenzweig
Associate Professor of Clinical Pediatrics in Medicine Columbia Presbyterian Medical Center
Scientific Leadership Council Chair
New York, N.Y.
Dr. Erika Berman Rosenzweig is the Medical Director of The Pulmonary Hypertension Comprehensive Care Center at Columbia University Medical Center–New York Presbyterian, where she is an Associate Professor of Pediatrics (in Medicine). Dr. Rosenzweig completed her medical school training at the Mount Sinai School of Medicine graduating with the highest overall performance in her medical school class; She then completed her pediatrics residency and pediatric cardiology fellowship training here at Columbia University, College of Physicians and Surgeons in 1999 and has been a faculty member since then focusing clinical and research efforts on pulmonary arterial hypertension. In 2008, Dr. Rosenzweig was appointed Director of The Pulmonary Hypertension Center at Columbia University Medical Center.
Dr. Rosenzweig has extensive clinical and research experience in the field of adult and pediatric pulmonary hypertension and holds a joint appointment in the Department of Medicine. With training in pediatric cardiology, Dr. Rosenzweig also has special expertise in the treatment of pulmonary hypertension related to congenital heart disease and was named Associate Director of the Division of Pediatric Cardiology in 2013. Dr. Rosenzweig is the Immediate past – Editor in chief of the medical journal, Advances in Pulmonary Hypertension and Vice-Director, and Director-elect, of the Pediatric Pulmonary Hypertension Network of North America, PPHNet. Dr. Rosenzweig is also an active member of the national and international scientific pulmonary hypertension community and is Chair of the Scientific Leadership Council for the Pulmonary Hypertension Association and is on the Board of Trustees of PHA, with a seat on the Governance Committee and the Strategic Planning Committee.
Dr. Rosenzweig has been a principal investigator for many national and international clinical research trials evaluating novel medical therapeutics for pulmonary hypertension as well as the genetic and pathophysiologic mechanisms of pulmonary vascular disease. She is widely published on the topic of pulmonary hypertension.
Colleen Brunetti, M.Ed., C.H.C.
Owner, ColleenBrunetti.com
New Hartford, Conn.
Colleen Brunetti, M.Ed., C.H.C.
Development Committee Chair, Finance Committee member, GO PHAR Co-Chair, owner ColleenBrunetti.com
New 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 spearheaded or co-led several fundraisers, spoken to support groups and fundraisers around the country, testified twice to the FDA on behalf of PHA and patients everywhere, 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 consulting, writing, teaching online and health coaching.
Colleen Connor
PH Patient
West Chester, PA
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.
Laura D’Anna, DrPH, MPA
Senior Research Fellow and Associate Director, California State University Long Beach Center for Health Disparities Research
Long Beach, Calif.
Laura D’Anna, DrPH, MPA
Senior Research Fellow and Director, California State University Long Beach Center for Health Equity Research
Long Beach, Calif.
Dr. Laura D’Anna’s sister, Rachel Hoyt, was diagnosed with PH in 1993 – a time when little was known about the disease and no treatments existed. She provided care and support to her sister and advocated for finding a cure, leading to Dr. D’Anna’s service as a Board member for the Primary Pulmonary Hypertension Research Foundation, a small, not-for-profit created to raise funds to support PH research founded by a dynamic PH patient, Gabrielle Miyara, in southern California. Unfortunately, Rachel Hoyt lost her battle with PH in 1995, and Gabrielle Miyara also succumbed to the disease in 1999. This tremendous personal loss resulted in an ongoing commitment to the endeavor of eradicating PH. As part of her continued fight against PH, Dr. D’Anna joined the PHA Board of Trustees in 2006.
Dr. D’Anna has twenty years of experience in the development, administration and evaluation of public and community health agencies and programs. She holds a doctorate in public health from the University of California Los Angeles, a Master of Public Administration degree from California State University, Long Beach, and a Bachelor of Arts degree from Whittier College. Her primary research interests are racial and ethnic health disparities and specifically, how experiences of discrimination affect health and health disparities.
In her current role as director of the NIH-funded California State University, Long Beach Center for Health Equity Research, Dr. D’Anna designs and conducts community-based, health-focused research. Dr. D’Anna also works as a private consultant assisting not-for-profit organizations with strategic planning, business and program development, research design and evaluation. Previously, she served as Vice President of Community Affairs for Planned Parenthood of Orange and San Bernardino Counties in California; the executive director for a non-profit, community-based clinic in south Orange County; and manager of Preventive Health Clinical Services for the Long Beach Department of Health and Human Services, where clinical services and CDC-funded research protocols were combined to identify and evaluate effective HIV interventions.
Dr. D’Anna serves on the PHA Board of Trustees and has a seat on the Governance Committee and on the Executive Committee.
Ramona Doyle, MD, MSc
Vice President of Therapeutics – California Institute of Regenerative Medicine
Ramona Doyle, MD, MSc
Vice President of Therapeutics – California Institute of Regenerative Medicine
Dr. Doyle is currently Vice President of Therapeutics at the California Institute of Regenerative Medicine (CIRM) where she oversees teams working to advance CIRM’s mission to advance stem cell treatments to patients with unmet medical needs across multiple disease areas including cancer, neurodegenerative diseases, blinding eye diseases, as well as heart, lung and liver disease. Currently Dr. Doyle is also Clinical Professor of Medicine at UCSF where she volunteers her time as an attending physician in the Adult Pulmonary Hypertension Clinic. Dr. Doyle has been involved with the PHA for many years and has served on the Scientific Leadership Council.
Dr. Doyle was on the faculty 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 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. From 2007-2009 she was Medical Director at Gilead Sciences where she was responsible for programs in pulmonary hypertension. At Gilead she designed the Gilead PH Scholars Program and worked with colleagues on several clinical trials for new therapies for patients with pulmonary hypertension.
As Senior Group Medical Director in Respiratory and Allergic Diseases at Genentech she built and directed a team of clinical scientists and physicians in the US, the UK and China and while at Genentech helped get the first biologic medicine approved for a severe, debilitating skin condition, and worked with the FDA, the EMA and health authorities around the world in designing, implementing, and executing on multiple global clinical trials in several disease areas. During her time at Genentech Dr. Doyle also served as a volunteer physician at the Clinic By the Bay, a free clinic in the San Francisco area, for the uninsured. 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 serves on the PHA Board of Trustees, and has a seat on the Development Committee.
Stacey Gausling, OT/L
Occupational Therapist & Rehab Marketing Specialist
Portland, Oregon
Stacey Gausling, OT/L
Occupational Therapist & Rehab Marketing Specialist
Stacey GauslingStacey Gausling was diagnosed with PAH due to Lupus/Mixed Connective Tissue Disorder in 2006 at the age of 39 while living in Austin, TX. Initially she was led to believe that she only had two years to live and was in the process of putting her affairs in order when she found the PHA website. Fast forward to 2015 and you will find her travelling with her supportive husband Jim and their three dogs; making individualized planned visits with PH patients that live in remote areas, while in between travel therapy assignments.
Stacey is the co-inventor with husband Jim of the ACSS (frameless ergonomic backpack suspension system) as well as co-inventor for two dynamic splint systems for a former employer. During the early years with PH when she found herself hobbyless, she co-founded the therapy based website www.localtherapysource.com.
Stacey is the founder/administrator for a large private Facebook support group, has been active in the PH communities in Southern CA and Portland, OR; has participated in the 2013 Congressional Luncheon and Advocacy Day; was a patient panel member for the FDA meeting, and completed a webinar focused on Occupational Therapy based strategies for managing PH. She has continued to work in indirect and direct patient care with those affected by physical and cognitive challenges. Her goal of living a purpose filled life is being achieved by using her OT knowledge to empower those in the PH community.
Stacey serves on the PHA Board of Trustees and has a seat on the Conference Committee and on the Strategic Planning Committee.
Amy Kimber, RN, APNP
PH Program Coordinator for Froedtert and the Medical College of Wisconsin
PHPN Representative (Chair)
Amy Kimber, RN, APNP
PH Program Coordinator for Froedtert and the Medical College of Wisconsin
PHPN Chair
Amy Kimber, RN, APNP, ANP-BC is the Pulmonary Hypertension (PH) Program Coordinator for Froedtert and the Medical College of Wisconsin (MCW). Amy joined Froedtert and MCW in 2009 to provide inpatient and outpatient clinical care. This role includes patient and family education, as well as faculty and staff education/development for multiple disciplines within the hospital, such as Pulmonary & Critical Care, Pharmacy, Respiratory Therapy, and Nursing. Her duties also include creating/updating policies and procedures, staff annual competencies, hospital workflow of PH patients, improvements to the electronic medical record charting system, and assisting with clinical research.
Amy joined the Pulmonary Hypertension Association (PHA) and felt motivated after attending her first PHA International Conference in 2010. With PHA’s guidance, she started Froedtert & MCW’s first Pulmonary Hypertension Support Group for patients and families in 2011.
She has been a member of PHA’s Pulmonary Hypertension Professional Network (PHPN) Education Committee and Practice Committee since 2010. Since September, 2014, she has been the Chair of the Education Committee and a member of the Scientific Leadership Council Education Committee.
Amy has written for PHA’s publication Pathlight and was an author for PHA’s Online University Allied Health Clinical Vignettes. She was named a PHA Periwinkle Pioneer in 2015, for her collaborative efforts with the PHPN.
Froedtert & MCW was the first hospital in Wisconsin to become accredited as a PHA Comprehensive Care Center (PH-CCC) in July, 2015, which recognizes hospitals for their quality care of patients with PH. Amy was instrumental in the accreditation process, as well as continuing to ensure Froedtert & MCW’s commitment to patient care. She is passionate about the accreditation process and as of June, 2016, Amy will be a member of the Pulmonary Hypertension Care Center Review Committee. She is also filming education videos about PH and PH medications through the PHA.
Amy has been a speaker for PHA on the Road, as well as the medical keynote speaker for the PHA Midwest Chapter O2 Breathe Steps for Stripes 3rd Annual PH walk. She is a member of the PHA Board of Trustees, the PHPN Chair, and is speaking at a medically-led session, as well as plenary session at the PHA International Conference in 2016.
Amy began working in the hospital setting in 2001 and graduated with her Bachelor’s Degree of Science in Nursing (BSN) from University of Wisconsin- Milwaukee in 2005. She worked as a Registered nurse (RN) on a medical/telemetry unit. She graduated with her Masters of Science in Nursing (MSN) from Marquette University in Milwaukee in 2009. She is an Advanced Practice Nurse Prescriber (APNP) and is Board Certified through the American Nurses Credentialing Center (ANCC) as an Adult Nurse Practitioner (ANP-BC). Amy also works as a clinical site visitor for Family Nurse Practitioner (FNP) students at Alverno College in Milwaukee.
Amy is Chair of the PH Professional Network (PHPN), and serves on the PHA Board of Trustees as a PHPN Liaison.
Jessie Kohler, Esq
Attorney
Santa Monica, Calif.
Jessie A. Kohler, Esq
Attorney
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.
Mitchell Koppelman
Retired VP Strategic Planning Minerals Technologies Inc.
Principle Consultant Mineral Solutions & Strategy
North Plainfield, NJ
Mitchell Koppelman
Retired VP Strategic Planning Minerals Technologies Inc.
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, is 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 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, reside in North Plainfield NJ, and were the proud parents of two daughters, both who passed away way too soon. As Debbie herself courageously battles PAH, she and Mitch eagerly await her pending retirement (2017) and a relocation 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. Koppelmanserves on the PHA Board of Trustees, has a seat on the Investment Committee and is Chair of the Strategic Planning Committee.
Michael McGoon, MD
Professor of Medicine, Mayo Clinic
Rochester, Minn.
Michael McGoon, MD
Professor of Medicine, Mayo Clinic
Rochester, Minn.
Dr. Mike McGoon is a consultant in the Division of Cardiovascular Diseases at the Mayo Clinic and Professor of Medicine at the Mayo Clinic College of Medicine. He attended college at Harvard and medical school at Johns Hopkins, where he also did his medical residency. He completed subspecialty cardiology training at Mayo and has been on staff there since 1983. Besides his involvement with pulmonary hypertension, Dr. McGoon specializes in cardiac pacemaker, defibrillator and cardiac re-synchronization device implantation and management. Dr. McGoon is also Chair of the REVEAL Registry Steering Committee.
Dr. McGoon has a long history with the Pulmonary Hypertension Association. He served as Chair of the Scientific Leadership Council from 2002-2004, the chair of the Board of Trustees from 2006-2008, and the Immediate Past-Chair from 2008-2010. Dr. McGoon has seats on both the Development and Strategic Planning Committees. He continues his membership in the Scientific Leadership Council and the PH Clinicians and Researchers.
He lives in Rochester, Minn. with his wife Bonnie and son Joe. His three grown daughters live in Phoenix, Minneapolis and Eugene. The McGoons are also PHA special event coordinators, hosting an annual event in the Rochester area to raise funds for PH research.
Vallerie McLaughlin, MD
Professor of Medicine, University of Michigan
Director, Pulmonary Hypertension Program at University of Michigan
Ann Arbor, Mich.
Vallerie McLaughlin, MD
Professor of Medicine, University of Michigan
Director, Pulmonary Hypertension Program at University of Michigan
Ann Arbor, Mich.
Dr. Vallerie McLaughlin received her bachelor’s degree in Biomedical Engineering at Northwestern University, Technologic Institute, Evanston, Illinois, and her Doctor of Medicine from Northwestern University Medical School, Chicago, Illinois. Upon completion of her residency in Internal Medicine at the University of Michigan and her fellowship in cardiovascular diseases at Northwestern University, she served as Associate Director of the Center for Pulmonary Heart Disease at Rush University in Chicago. She is currently the Director of the Pulmonary Hypertension Program in the Division of Cardiovascular Medicine at the University of Michigan in Ann Arbor, Michigan. Dr. McLaughlin is also a Professor of Medicine.
Dr. McLaughlin is a fellow in the American College of Cardiology, the American College of Chest Physicians, and the American Heart Association. She is a member of the American Thoracic Society and the American College of Chest Physicians Pulmonary Hypertension Guidelines Panel. She was also the Chairperson of the American College of Cardiology/American Heart Association Clinical Expert Consensus Document on Pulmonary Hypertension and Chairperson of the Pulmonary Hypertension Breakthrough Initiative Steering Committee. She is a member of the American College of Cardiology Scientific Program Committee and has previously served as the Chairperson of the American Heart Association Women in Cardiology Committee.
Dr. McLaughlin’s research focuses on pulmonary arterial hypertension and she has been the principal investigator of numerous clinical trials in this area. She is frequently an invited lecturer at national and international conferences on the topic of pulmonary hypertension. She is author of numerous peer-reviewed articles and book chapters. She is also a past Editor-in-Chief of Advances in Pulmonary Hypertension, the official journal of the Pulmonary Hypertension Association.
Rita Orth, RN
Support group leader
Danville, Calif.
Rita Orth, RN
Support group leader
Danville, Calif.
Rita and her husband Guy Orth live in Danville, Calif. She was diagnosed with PAH in 1999 and after being on calcium channel blockers for a short time, started on Flolan in 2000. Rita was working in a hospital at a job she loved on the medical/surgical units and ICU/CCU. However, shortly after diagnosis she went on disability with the encouragement of her cardiologist.
While searching the internet for more information about the disease Rita discovered PHA. She called the Patient-to-Patient Support Line and spoke with PHA founder Pat Paton on many occasions. Rita has been volunteering for the Support Line for several years as she wants to give back the hope and encouragement she received to others who are newly diagnosed. This shows in her other activities as well.
Rita and Guy are the leaders of the San Jose, Calif. PH support group, and Rita is on the 2010 Conference Committee as the chair of Conference support groups. She has also been on the planning committee of the California PH Forum since 2000. In addition, she is a patient advocate volunteer for seniors in skilled nursing facilities in her county. Rita has been to every PHA conference since she was diagnosed and was so inspired by the advocacy work and research efforts for a cure that she included PHA in her will. Rita says, “I have always been a big patient advocate and even more so now that I am the patient!”
Rita serves on the PHA Board of Trustees and is Co-Chair of the Conference Committee.
Ronald J. Oudiz, MD
Scientific Leadership Council Chair-Elect
Professor of Medicine
Director, Liu Center for Pulmonary Hypertension
LA Biomedical Research Institute at Harbor – UCLA Medical Center
Torrance, CA
Ronald J. Oudiz, MD
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.
Diane Ramirez
Advocacy Chair, Piedmont North Carolina Support Group
Lexington, N.C.
Diane Ramirez
Advocacy Chair, Piedmont North Carolina Support Group
Lexington, N.C.
Diane is a long-term survivor of PH, having lived with the disease for over 20 years. When she was first diagnosed there were no treatments available; the only option was a heart-lung transplant. Instead of giving up hope, Diane made a decision to raise awareness of PH by talking to the media.
Over the years, Diane has spoken to every member of the North Carolina delegation to gather support for the Tom Lantos Research and Education Act. She also has spoken to numerous media outlets and her story has appeared in many well-known newspapers or TV shows. Diane’s most recent media successes include an interview on Dr. Radio with PH specialist Dr. Val McLaughlin and a feature in the Patient Voices section of the New York Times.
Diane is also an energetic and involved member of the PHA community. She spoke on numerous occasions during the 2010 Conference. She is also the Advocacy Chair of her support group and regularly presents to her group and others about the importance of advocacy. Diane serves on the PHA Board of Trustees and has a seat on the Conference, Finance and Audit, and Governance Committees.
Fran Rogers, MSN, CRNP
Temple University Hospital
Philadelphia, PA
PH Professional Network Liaison
Fran Rogers, MSN, CRNP
Nurse Practitioner and Clinical Coordinator
Temple University Hospital
Philadelphia, PA
PH Professional Network Liaison
Fran Rogers, MSN, CRNP is the Nurse Practitioner and Clinical Coordinator of the Temple University Hospital Pulmonary Hypertension and Right Heart Failure program. She has been working exclusively in PH for the last eight years. Fran has past experience as a heart transplant nurse practitioner as well as a VAD coordinator. Fran served as vice chair of PHA’s PH Professional Network Symposium Committee in 2013 and chair of the Symposium Committee in 2015; she has been a Symposium Committee member since 2008. She was a member of PHPN Executive Committee for four years, and will become the Executive Chair in June of 2016. Fran was also on the Planning Committee for PHA on the Road in Philadelphia in 2015 and was a speaker at the event. She has served on the ACC planning committee for PH content in 2013 and 2014 and has lectured on various aspects of PH at ACC and AHA’s Cardiovascular Nursing Symposium. Fran has published in Advances in Pulmonary Hypertension, Circulation: Cardiovascular Imaging and Pulmonary Circulation.
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 currently serves as Chair of the PHPN Practice Committee, Chair of the Allied Health Committee for the PHA Online University and is a Co-Chair for PHA’s 2018 PH International Conference and Scientific Sessions Planning Committee.
Jack Stibbs
Attorney
Spring, Texas
Jack Stibbs
Attorney
Spring, Texas
Jack Stibbs lives in Montgomery, Texas, with his wife Marcia and two children. His daughter Emily has PH.
Jack originally joined the Board in 1999. As Vice President for Advocacy, he worked closely with Congressman Brady (R-TX) to facilitate the introduction of the first Pulmonary Hypertension Research Act bill in Congress. He has also served as Chair of the Board of Trustees and was Chair of the Governance Committee. Jack currently serves as Chair of the Investment Committee.
In 1999, Jack organized PHA’s first and largest research fundraiser. This now-annual event has raised over $1.7 million for research of pulmonary hypertension.
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!
Melisa Wilson, ARNP, ACNP-BC
Florida Hospital Medical Group
Orlando, Fla.
Melisa Wilson, ARNP, ACNP-BC
Florida Hospital Medical Group
Orlando, Fla.
Scientific Leadership Council Representative
Melisa Wilson, MSN, ACNP, ARNP-BC is the Pulmonary Hypertension Program Coordinator for the Orlando Health Heart Institute 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 cardiology experience and 8 years of experience in pulmonary vascular disease. She is the past chair of the Pulmonary Hypertension Professional Network symposium committee and is the current executive chair of the Pulmonary Hypertension Professional Network. She is a member of the American College of Cardiology Cardiovascular Team. She is also involved with the Orlando Pulmonary Hypertension Association (PHA) support group.
Melisa resides on the Pulmonary Hypertension Association Pulmonary Hypertension Comprehensive Care Oversight Committee, the PHA Scientific Leadership Council, and the PHA Board of Trustees. Mrs. Wilson has presented on various topics related to pulmonary hypertension at numerous national conferences including the American College of Cardiology 13 Expo, the National Kidney Foundation Spring Clinical Meeting, the American Academy of Heart Failure Nurses Advance Heart Failure Conference, the Pulmonary Hypertension Association Conference, and multiple Pulmonary Hypertension Professional Network Symposiums.
Melisa 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 pursing 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.
Members Emeritus
Dorothy Olson
PHA co-founder (1999)
deceased (2013)
Sebring, Fl.
Dorothy Olson
PHA co-founder (1999)
deceased (2013)
Sebring, Fla.
Board Emeritus
Dorothy Olson – one of the founders of PHA – lived in Sebring, Florida, and served on the Board of Trustees from 1990 until 2003, when she was elected to Board Emeritus. Until her passing in 2013, she remained a familiar figure and voice to many PH patients. Dorothy had a business background, having worked for AGWAY as an office manager with extensive experience in personnel, payroll, cost accounting, mediations, inventory control and procedure consulting. As a patient with chronic thromboembolic pulmonary hypertension, she underwent PTE surgery in 1995 in San Diego. She answered the 800 Support Line from the beginning and continued to do so until her passing. She was the reference contact for other patients with “clots.”
Dorothy chaired and served on various committees including personnel, nominations, by-laws and articles of incorporation and served as Secretary for seven years. Working with Teresa Knazik, also one of our “kitchen table” founders, the first Pathlight was published in 1990. Dorothy, Support Editor, will be remembered for her “Alphabet Soup” columns and tips and advice on coping and living with PAH. After becoming visually impaired in 1996, Dorothy was instrumental in forming a support group of others in her community who were legally blind. As her vision faded, Dorothy said, “I may not be able to see anymore, but I can still think and dial a phone. Use me.” For many years, Dorothy made personal thank you calls to PHA donors and contributed her time and talents in many other ways until her passing.
Harry Olson
deceased (2012)
Sebring, Fl.
Harry J. Olson
deceased (2012)
Sebring, Fl.
Board Emeritus
Harry Olson lived in Sebring, Fla., with his wife Dorothy – who was a long time PH survivor. Harry worked in Industrial Air-conditioning as a design and service representative. He retired in 1980 moving from Indiana to Florida when Dorothy was diagnosed with chronic thromboembolic pulmonary hypertension.
Both Harry and Dorothy were original founders of UPAPH/PHA with Harry serving on the Board until 1997. Along with caregiver activities, he was still actively involved and attended board meetings until his passing. Harry served in various capacities at all PH conferences and received the first PHA Caregiver Award in 1998. Harry designed and commissioned the PHA “Kitchen Table” banner that was presented to PHA at the 2000 Conference.
Jerry Paton
Owner, Dairy Queen (retired)
Estero, Fl.
Jerry Paton
Owner, Dairy Queen (retired)
Estero, Fl.
Board Emeritus
Jerry Paton lives with his wife Pat, a PH patient, in Estero, Florida. Now retired, Jerry worked in sales management for several radio stations and owned and operated Dairy Queen Brazier stores.
Jerry and Pat are two of the original co-founders of PHA. Jerry was a member of the original Board and co-treasurer during PHA’s first two years. He served as treasurer for the next six years and then acted as assistant treasurer for several years. He became an emeritus member of the Board of Trustees in January 2008.
Pat Paton, RN
Nurse (retired)
PHA co-founder
Estero, Fl.
Pat Paton, RN
Nurse (retired)
PHA co-founder
Board Emeritus
Pat Paton is one of PHA’s original “kitchen table” co-founders. She has been a part of PHA from the very beginning with the first organizational meeting being held around the kitchen table at Pat and Jerry’s home in December 1990.
Pat has served in many capacities with PHA/UPAPH (UPAPH was the original name for PHA), including assistant treasurer and board member. At conferences, Pat has been a host, moderator, and presenter. She regularly contributed to the Pathlight when it began publishing. She is also the co-coordinator of the Patient-to-Patient Support Line.
Pat is currently an emeritus member of the Board and consistently attends meetings twice per year.
Ed Simpson
Professor Emeritus, College of Education at Northern Illinois University
Holiday Island, Ark.
Ed Simpson
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, Ark.
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.
Ex-Officio
Brad A. Wong
President & CEO, Pulmonary Hypertension Association
Silver Spring, Md.