The Pulmonary Hypertension Association honored eight remarkable members of the PH community during an Aug. 17 ceremony at the PHA 2024 International PH Conference and Scientific Sessions in Indianapolis.
PHA’s Outstanding Member awards recognize dedication and service to the PH community and PHA through volunteer efforts in patient/caregiver support; advocacy; promotion of quality patient care; and advancing PH research.
The honorees are:
Julie Hendry Memorial Scholarship: Adriana Mares
Mares is a student researcher at Yale School of Medicine. Since 2018, Mares has served as co-leader the PHA support group in her hometown, the El Paso PHighters. She became involved through her mentor, PH specialist Hernando Garcia, and mentored by the group’s leader Estella Medina. Mares says she is honored to be recognized with the Julie Hendry Memorial Scholarship, named for PHA’s first support group leader.
Mares aspires to an academic career focusing on pulmonary arterial hypertension and structural and congenital heart disease. She is the founder of the Institute of Cardiology at El Paso, an advisory member and scholar for the NIH All of Us Research Program, adviser to the American College of Cardiology Medical Student Leadership Group and a committee member of her local American Heart Association chapter. She has written more than 25 peer-reviewed journal articles and abstracts and is recognized for her contributions to cardiovascular medicine.
Outstanding Allied Health Professional: Sandi Lombardi
Lombardi has dedicated 25 of her 30 years’ experience in pulmonary and critical care medicine, to pulmonary arterial hypertension. For the past 22 years, she has been the clinical care coordinator for the pulmonary vascular program at the University of California, San Diego Health. Lombardi provides education to patients and providers about epoprostenol (Flolan) and intravenous treprostinil (Remodulin). She also works with case managers and insurance companies to secure approval for PAH medications. She has been a sub-investigator in several clinical trials, focusing on PAH’s impact on patients and families.
Twenty-five years ago, Lombardi founded a PHA support group, which thrives today through enthusiastic patients who mentor newly diagnosed members. She considers the support group her proudest achievement and plans to keep organizing meetings well into her retirement.
Outstanding Caregiver: Cindy Warnberg
Warnberg was devastated by her daughter Chelsea’s 2011 PAH diagnosis. At the time, Chelsea was about to enter her senior year at the University of Wisconsin but was told she wouldn’t be able to finish her degree or hold a full-time job. The family sought a second opinion from Michael McGoon at the Mayo Clinic and began their PH battle. The year after Chelsea’s diagnosis, the family participated in a fundraising walk to raise PH awareness.
After the family learned the walk was to be discontinued, Chelsea suggested they start a golf tournament because she participates by riding in a golf cart. They started Puttin’ PHore Poots (Chelsea’s nickname) in 2013 with 46 golfers and six sponsors, raising just over $5,000. Since then, the event evolved with the addition of mini golf, a raffle and silent auction. Last year’s tournament had 84 golfers, 125 dinner guests, 18 hole sponsors, and raised $30,000. Since the first tournament, the event has raised over $200,000 for PHA.
“We are hoping this year will be bigger and better than ever,” Warnberg says. “Puttin’ PHore Poots is an exercise of love and support for all those suffering with PH. We couldn’t have done this without all of the support from family and dear friends.”
Outstanding PH Citizen: Michelle Sweitzer
Sweitzer’s PAH journey began more than 40 years ago, when her 4-year-old brother was diagnosed. There were no medications then, and he was too young for a heart and lung transplant. He died 11 weeks later. Ten years later, Sweitzer’s dad was diagnosed.
“We weren’t about to sit around and do nothing,” Sweitzer says. “So, we found a clinical study at UCLA, and my dad was able to get on the experimental medicine under a compassionate use basis. They figured he had less than a year to live.”
Sweitzer and her two surviving brothers underwent testing, and one brother had elevated pulmonary pressures but no symptoms. His doctors prescribed blood thinners and calcium channel blockers. The family began working with support groups, striving to create awareness and build community among other patients, caregivers, doctors and nurses.
In 1997, her brother got pneumonia and couldn’t recover. His lungs were too damaged from PAH. His death spurred the family to work even harder for the PAH community, spreading awareness and creating hope. “It became a way of life for us,” Sweitzer said.
In 2007, her dad lost his battle with PAH. After that, the family started a golf tournament through PHA in memory of Sweitzer’s dad and brothers. They raised over $400,000 for research over eight years.
Sweitzer was diagnosed with PAH in 2017, and her brother was diagnosed two years later. “Having PAH in my family and now personally has made me be purposeful with my time, making the most of every day, while giving thanks for all the silver linings God blesses me with,” Sweitzer says.
Outstanding Physician: Jean Elwing
Elwing, is director of the pulmonary hypertension program at the University of Cincinnati’s Pulmonary, Critical Care and Sleep Medicine Division. Her clinical and research focus is pulmonary vascular disease and pulmonary hypertension. She has been a faculty member of the university’s College of Medicine since 2007.
Outstanding Support Group Leader: Sophie Estevez
Estevez is the leader of PHA’s support group in San Antonio, Texas. The 44-year-old mom loves singing, public speaking, business and nature. Above all, she enjoys being a global patient advocate, “helping shine light when others are walking through a dark tunnel looking for hope.”
Estevez is a face of Johnson & John’s Breathe In, Speak Out campaign and has been featured in several articles. As @The_PHWarrior, she has imagined herself exactly where she is today, a survivor for 22 years.
Outstanding Young PH Citizen: Cash Harpp
Harpp was diagnosed with idiopathic PAH in 2015 at age 8. He lives in Indianapolis and receives treatment at Cincinnati Children’s Hospital, a PHA-accredited PH Care Center. While growing up with PH, Harpp shows strength and grace in dealing with disease-related challenges.
Harpp has participated in several clinical trials and studies, and was asked to participate as Patient No.1 in Merck’s sotatercept (Winrevair) pediatric trial. Harpp volunteered to participate despite the uncertainty of side effects because he wanted to help other children. During the last year and a half, Harpp has traveled to Cincinnati every three weeks for hundreds of tests and has never complained about the sacrifices he’s made for the trial.
Harpp loves NASCAR, playing video games and most other sports. He enjoys spending time with his family, especially his 13-year-old brother Finley, who accepted the award for him.
Rino Aldrighetti Leadership Award: Anton Morkin
In 2020, Morkin’s 18-month-old son was diagnosed with pulmonary hypertension. Although Morkin had no background in medical science, he dedicated himself to learning as much as possible about the disease.
Motivated by his son’s diagnosis, Morkin co-founded the patient advocacy nonprofit TBX4Life in 2021 with Dr. Eric Austin from Vanderbilt University. The organization supports people affected by TBX4 Syndrome, which leads to heritable PAH, PH related to interstitial lung diseases and skeletal issues. TBX4Life raises awareness about TBX4 Syndrome and heritable PAH and provides support and education. Through TBX4Life, Morkin has united families from more than 10 countries and established an international scientific consortium with over 70 members. His work promotes cross-disciplinary research aimed at discovering new therapies for this rare condition.
