Donor Stories

 Planned Gift Allows Board Member To Give Even More Back to PHA

Carl Hicks

Carl Hicks’ first encounter with pulmonary hypertension (PH) was in 1994. It was then that his 12-year-old daughter, Meaghan, a beautiful, active young girl began to get short of breath with increasing frequency. When she fainted after climbing just three steps it became obvious that something was very wrong. Like so many other PH patients Meaghan was initially diagnosed with asthma. Eventually her parents were informed that she had pulmonary hypertension which, they were told, was a “terminal illness and there was nothing they could do.”

But getting to a PH specialist, Dr. Robyn Barst, and receiving the appropriate treatment, initially calcium channel blockers in her case, meant that Meaghan lived a longer, healthier life than anyone could have imagined. Years went by and Meaghan was mostly asymptomatic.

Though hesitant at first to get actively involved in PHA Carl decided in 2003 that he wanted “to do something more.” He had been aware of PHA through our website and then Pathlight, PHA’s quarterly newsletter. Initially he sat in on a Board of Trustees meeting to observe. What he saw impressed him. Here, he says, was an association that turned “every dollar into three” and did something worthy “with every dollar they had.” He became a member of the PHA Board of Trustees in 2004 and later became its Chair.

Eventually Meaghan’s PH did progress and despite a heart/lung transplant she passed away in 2009.

Carl, an army veteran, describes her as “the strongest person he has ever known.”

Despite his loss, Carl continues his involvement with PHA in many ways including as a member of PHA’s Legacy of Hope Society. Initially he wasn’t sure how to go about giving a bequest but soon discovered it only involved a one-page notarized amendment to his will. “That’s all it takes,” he says. For him it then became a question of how could he not give: “I don’t need it. Why wouldn’t I, or indeed anyone, want to give.”

“Legacy giving is one of the easiest ways to give back to PHA,” Carl says. “What people don’t realize is that you don’t have to give everything, just the percentage that you are comfortable with.” Legacy giving supports PHA’s future in a number of ways: advocating for new PH research, raising awareness with the medical community and providing patient support. But for Carl it simply means helping “all the other Meaghans out there.”



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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.