“In a little more than two decades, as a team of patients, caregivers, clinicians, researchers, fundraisers and volunteers, PHA has seen great progress in the areas of patient care, public awareness and PH research.”
Silver Spring, MD. (PRWEB) January 05, 2016
Since Rino Aldrighetti joined the Pulmonary Hypertension Association (PHA) as the first paid staff member in 1999, the national nonprofit has grown to include more than 50 staff members with four chapters around the country. As he approaches retirement in 2016, which coincides with PHA’s 25th anniversary, Aldrighetti is reflecting on the association’s contributions to advancing care for pulmonary hypertension (PH) patients and their caregivers.
Pulmonary hypertension (PH), which some people call “the other high blood pressure,” is increased blood pressure in the blood vessels of the lungs that puts pressure on the right side of the heart and can lead to death from heart failure.
PHA is a national nonprofit that relies on donations to fund its many programs, including the nation’s largest PH patient and caregiver support group network, lifesaving early diagnosis awareness and education programs, specialty care resources, and research to find ways to prevent and cure PH. For 12 consecutive years, the association has received the highest rating — four stars — for fiscal accountability and transparency from Charity Navigator, placing it in the top 1 percent of all rated charities.
PHA, which serves as a model for more than 70 international PH organizations, represents a community of patients, caregivers, healthcare professionals and scientists who are guided by PHA’s mission and rooted in its humble beginnings. Three PH patients and a caregiver founded PHA Jan. 12, 1991, as they met at a kitchen table in Florida with the mission of ending isolation and extending the lives of people affected by PH. Today, that kitchen table sits in a conference room at PHA’s national headquarters in Silver Spring, Md.
“If you look at the four founders around the kitchen table, what you really had was a microcosm of what PHA is today. Four women – three patients, one caregiver,” Aldrighetti said. “Two of those women were medical professionals (nurses). Two of them had PAH [the most common form of PH], one of them had CTEPH [a rare form of the disease caused by old blood clots in the lungs] and the other was a caregiver. They described themselves as a patient organization, but they were also very open to and actively reached out to the medical community for their involvement.”
Aldrighetti recalls his job interview 17 years ago with Bonnie Dukart, a PH patient who learned she had the disease while attending Cornell University. She told him she kept her diagnosis a secret for 10 years until she finally visited the PHA support group closest to her home, which at the time was 800 miles away in Chicago. She said when she walked in the door and saw seven other patients, her life changed, and she became very active in PHA.
“I immediately got a sense of the isolation that existed for people with this disease at the time,” Aldrighetti said. “Later, when I went to my first Board of Trustees meeting, three women walked in about the same time – all with oxygen tanks. During the course of the day, people said things like, ‘You know, this decision may not help me, but it will help other people. It will help patients in the future.’ I thought to myself, these people are heroes. What I came to understand is that survivability for patients without treatment was less than three years. In 1999, there was only one treatment, and it had been approved for quality of life rather than extension of life.”
Aldrighetti said he knew he could make a difference for PHA. As the organization marks its 25th anniversary, members will honor Aldrighetti among the 25 individuals and groups recognized as PHA Periwinkle Pioneers for their contributions to the association’s successes since its founding.
“In a little more than two decades, as a team of patients, caregivers, clinicians, researchers, fundraisers and volunteers, PHA has seen great progress in the areas of patient care, public awareness and PH research,” Aldrighetti said. “Since PHA’s founding, the number of FDA-approved PH treatments has grown from 0 to 14 – more than those approved for all but two of the 7,000 identified rare diseases; PHA has made more than $17 million in research commitments for PH research programs; and more than two dozen Pulmonary Hypertension Care Centers [PHCCs] have undergone and completed PHA’s new accreditation process.”
In December, PHA’s new PHCC Board of Directors, made up mostly of PHA Trustees, met for the first time. The centers will provide data for the new Pulmonary Hypertension Association Registry, a major advancement in PH care and research.
PHA is the central source for information about PH. Advances in Pulmonary Hypertension, The Official Journal of the Pulmonary Hypertension Association, reaches 40,000 cardiologists, pulmonologists and rheumatologists quarterly, with licensed editions in Spain and India. In addition, PHA distributes its Pathlight magazine to 10,000 patient/caregiver/medical professional members and supporters each quarter. In April 2015, the association launched myPHA, a social network for its community of patients, and in November, to broaden public awareness about the disease, PHA launched “Heart2CurePH,” a national multi-media public service campaign, which includes radio and TV public service announcements, print ads, billboards, digital ads and public transit advertising.
About the Pulmonary Hypertension Association Headquartered in Silver Spring, Md., with a growing list of chapters across the country, the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension organization. Its mission is to extend and improve the lives of those affected by PH; its vision is a world without PH, empowered by hope. PHA achieves this by connecting and working together with the entire PH community of patients, families and medical professionals. Among its programs, PHA facilitates more than 245 support groups around the country and delivers continuing education for medical professionals through PHA Online University. For 12 consecutive years, PHA has received the highest rating — four stars — for fiscal accountability and transparency from Charity Navigator, placing it in the top half of 1 percent of all rated charities. For more information, please go to http://www.PHAssociation.org, @PHAssociation on Twitter or http://www.facebook.com/PulmonaryHypertensionAssociation.