Family Affair: 30 Years of Volunteering

30 Years of Volunteering

Left to right: Mary Clare, Tom, Terry and Annie

When Terry McGraw was diagnosed with primary idiopathic pulmonary hypertension (now IPAH) in January 1990, she had never heard of the disease.

“During the first few years after my diagnosis, my husband and I focused on doing all we could to learn about the disease and get answers,” Terry says.

Her husband Tom remembers being terrified. He worried that Terry wouldn’t be around for their two daughters. “The fear of them not having Terry hit hard,” he says. But Terry fought, and Tom began to plan and fight on her behalf.

Terry and Tom are among the families who have lived with pulmonary hypertension (PH) for many years – in their case, decades. At the time, there wasn’t much information available about PH, and it took the McGraws about five years to learn about then fledgling Pulmonary Hypertension Association (PHA).

Making a difference Making a difference Terry slowly became more involved with PHA as time went on and the association grew. At first, she started participating on the patient forum on PHA’s website. It helped her connect with other patients and exchange advice. As her kids got older, she began attending support group meetings and started fundraising for the PHA Boston O2breathe Walk. Through her participation, she learned how vital PHA is to the ‘The fight is not over, and PH community. I know PHA has the right “Because our disease is so rare, priorities.’ we need a louder voice, and PHA is a strong advocate that projects — Tom McGraw, caregiver that louder voice — so much louder than we could muster on our own,” Terry says. Tom was slower to get involved. “At first, I was more focused on Terry and our kids, but as time passed, I realized that PHA was an important ally to us.” Tom, Terry and their daughters, Mary Clare and Annie, started the fundraising team “Tipperogues for Terry” for the Boston O2breathe Walk. Tom and

Mary Clare also got involved with the PHA Greater Boston Support Group, eventually becoming co-leaders with Wendy Berry, who has PH. “This disease stinks, but it can be managed,” Tom says. “Over the past 30 years, I have seen firsthand what determination can do when combined with support from family, friends and committed and caring professionals.”

Looking back, Terry recalls the looks on the doctors’ and nurses’ faces when she was diagnosed. They told her: “We’re sorry; you have a tough one.”

Thirty years later, she says she has many wonderful memories because of great doctors and nurses, friends and family, fellow patients and PHA staff who helped her fight.

“I am living proof that you can survive, and PHA was a big part of my journey.”

Join the McGraw family in fighting PH. Visit www.PHAssociation.org/Donate to support PHA’s mission to extend and improve the lives of those affected by PH.

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).

“My first patient was a young woman who was admitted to the hospital for right ventricular failure,” Dr. Rich recalls. “My chief suggested it would make a good career focus.”

Now a cardiologist at Bluhm Cardiovascular Institute at Northwestern Memorial Hospital, Dr. Rich has seen many changes with PH treatment and awareness. He’s also had many memorable experiences.

“One of my patients was a teenage girl whom I treated with Flolan,” Dr. Rich remembers. “It was her prom, and her mother managed to tape her CADD pump to her thigh under her dress so that she could wear the dress she wanted without revealing the pump. It was such a great story that she ended up on the cover of People magazine.”

Dr. Rich learned of the Pulmonary Hypertension Association (PHA) in 1996 at its second International PH Conference and Scientific Sessions in Atlanta. As PHA grew as an organization, Dr. Rich became involved in many capacities.

For the past 15 years, he has helped secure support for the Pulmonary Hypertension Association Registry (PHAR), Pulmonary Hypertension Care Centers (PHCC) and a potential new clinical trial network.

Dr. Rich has been an annual donor to PHA for more than 20 years.

“Patient support is an essential part of the care of [PH] patients,” he says. “PHA has filled a very important niche for patients to know about their disease and to not feel alone in the world.”