30 Years of PHA: Hope, Visions and Stories
From simple beginnings – four women who met around a kitchen table in Florida in 1991 – the Pulmonary Hypertension Association (PHA) has evolved into an international community of more than 16,000 pulmonary hypertension (PH) patients, caregivers, family members and healthcare professionals.
To commemorate our 30th anniversary, PHA shares the PH community’s hopes, dreams and visions for the future, along with the stories of long-term patients. Join us in celebrating 30 years of PHA by contributing a quote here.
Learn more about PHA in 30 Milestones in 30 Years, a celebration of the shared history of PHA and the PH community for our 30th anniversary.
Help 11-Year-Old Baseball Player Strike Out PH
When Tyler Garigen was diagnosed with PH, he was only 4 years old. Thanks to the Pulmonary Hypertension Association (PHA), he and his family found hope for the future. “I can’t imagine living with PH without all the help from PHA.,” he says. Tyler, the face of PHA’s 30th anniversary fall fundraising campaign, encourages the PH community to help PHA continue providing support, education and research.
Remembering Rino Aldrighetti
With great sadness, the Pulmonary Hypertension Association announces the death of Rino Aldrighetti, who led PHA for nearly two decades. Rino, who died May 30, was the first PHA employee, hired in 1999 as part-time executive director. He soon became full-time and later was promoted to president and CEO. He retired in 2016.
Physician Perspective: Evolution of PH Care
Ivan Robbins, M.D., of Vanderbilt University Medical Center in Nashville, shares how PH treatment and research have evolved over the course of his career. His story originally appeared in the award-winning December 2020 issue of Pathlight magazine.
Spreading PH Awareness for 20-Plus Years
Elise Zwicky’s greatest fear at diagnosis was that she wouldn’t see her children grow up. More than 20 years later, she has hope that she and her husband will grow old together, watching their grandchild grow up.
Career Focus: Longtime Commitment to PH Treatment
Stuart Rich, M.D., was a cardiology fellow at the University of Chicago in 1978 when he began treating pulmonary hypertension (PH). Now retired from Northwestern Memorial Hospital, Dr. Rich has seen many changes with PH treatment and awareness. He’s also had many memorable experiences.
Determined To Be Defined by More Than PH
The past 23 years have shown Dawn Meador how strong she is. Since her 1998 diagnosis, she’s learned much about herself and how to appreciate little things. Dawn, of Suffolk, Virginia, shares her long-time pulmonary hypertension journey for the Pulmonary Hypertension Association’s 30th anniversary.
Family Affair: 30 Years of Volunteering
Terry and Tom McGraw are among the families who have lived with pulmonary hypertension (PH) for many years – in their case, decades. In the early 1990s, when Terry was diagnosed, little information was available about PH, and the McGraws didn’t find the fledgling Pulmonary Hypertension Association (PHA) for about five years. Initially, they got involved to find answers and eventually became volunteers and fundraisers. The McGraws initially shared their story with Pathlight, PHA’s member magazine, in connection with PHA’s 30th anniversary.
She Didn’t Expect to Turn 30. But PH Gave Her Strength
Alex Flipse was a young mom when she was diagnosed with idiopathic pulmonary arterial hypertension. She first noticed symptoms in 1998: She frequently felt fatigued but attributed it to chasing two toddlers while six months pregnant. Alex of Teceluma, California, originally shared her story in Pathlight magazine.
Beating the Odds and Living Life to the Fullest
When Donna Head was diagnosed in 1988, there were no pulmonary hypertension medications. She had to undergo a right heart catheterization every six weeks to make sure her calcium channel blockers were still working.
Support Group Leader Stays Strong Through Faith and Family
Gwendolyn Brown has lived with pulmonary arterial hypertension (PAH) for more than 40 years. She has survived a heart attack, three strokes and 11 mini strokes. She leads the Pulmonary Hypertension Association (PHA)’s Cleveland Community Support Group and is a minister at Zion Pentecostal Church of Christ.
PH Changed Her Life. It Taught Her to Persevere
Diane Ramirez of Lexington, North Carolina, was diagnosed with pulmonary arterial hypertension in 1987. At the time, fewer than 200 cases were known of the disease then known as primary pulmonary hypertension (PH). Diane originally shared her PH journey in the December 2020 Pathlight magazine, which launched the Pulmonary Hypertension Association’s 30th anniversary celebration.
Flolan at 25: First PH Treatment Offered Second Chance at Life
“It was a complete game changer,” says Murali Chakinala, M.D, chair of the Pulmonary Hypertension Association’s Scientific Leadership Council. “It provided the first real hope that PH patients had.”
Reenergized and Holding on to Hope
In 1966, 8-year-old Laura Hooley underwent surgery to repair a congenital heart defect. The surgery allowed her to play volleyball, ski and enjoy relatively good health. But her CHD eventually led to pulmonary hypertension. For American Heart Month, she shares what gave her new hope.
Born with Collapsed Lung, 36-Year-old Awaits Double Lung Transplant
I was told I would never see my childhood years, but I defeated that. Over time, I developed the nickname “Bones.” When my weight hit 100 pounds, my family celebrated. I was told that I would never see my teenage years, but I defeated that, too. I was told I would never get to see my adulthood. I’m now 36.
Melissa Hembree: My Heart Is Getting Stronger
As I’ve gotten older, my heart seems to be getting stronger. I am on medications for my heart and two medications for my PH. Each test comes back better than the last. I am kicking PH’s butt. If I can do it, so can you!
Sydni Burgess (caregiver)
My mother fought PH for six years, and it wasn't until I got older that I realized what PH patients truly go through and how much I admire the strength they show every day. My mom is the strongest woman I know. She didn’t look at PH as a downfall, and she never talked negative about what was happening to her body. She faced it head on with a smile on her face, and she knew that she had a family to fight for.