Donor Stories

Fighting PH Becomes a Family Affair

Josephine Maggio passed away in 1963, after developing pulmonary hypertension while she was ten weeks pregnant. Her family had no idea that PH could be familial. But years later Josephine’s sister Anne and her husband John learned the sad truth when their own children, John and Joanne, were diagnosed.


With their children now living with pulmonary hypertension, Anne and John made a promise to do everything they could to find a cure for PH. Since then, they have been generous and frequent donors to PHA ’s research fund, giving as much as they can afford.

Anne and John aren’t the only family activists, however. Joanne, a member of PHA’s Board of Trustees and patient liaison to PHA’s Scientific Leadership Council, led the way by starting a support group on Long Island and organizing the annual New York Fun Walk for PH. The whole family gets very involved in the event. They also write letters to their Congressmen and volunteer at PHA’s International Conferences.

For their family, finding a cure for PH is literally a matter of life and death.

When her own children were diagnosed, Anne reflected on stories her father told about how his mother died when he was very young and how several of his brothers and sisters passed away from a mysterious illness, leading her to believe that previous generations were also affected.


 

 

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NORD

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.