Founding Our Community
As professional awareness of PH was growing, Dorothy and Teresa saw a need to connect PH patients to helpful information and encouragement. They created a newsletter for PH patients called Pathlight, first published in May 1990. UPAPH sent out 50 copies of the first Pathlight to every patient they knew.
The first issue of Pathlight had a column designed to lift the spirits of PH patients, a personal piece about the frustrations of coping with PH, a short list of PH patients who had recently died and an article about the Foundation for Pulmonary Hypertension. Readers were encouraged to join UPAPH, and they did.
UPAPH had 35 members by November 1990. The medical world began to take notice of this active and burgeoning group of PH patients.
In 1991, Dorothy and Teresa were connected yet again through NORD to another PH patient, Pat Paton, and her sister Judy Simpson. Fortunately, Pat, Dorothy, and Teresa were all living in Florida at the time. On January 12, 1991, Pat organized a meeting at her home in Florida, and she was joined by Judy Simpson, Dorothy Olson, Teresa Knazik, and their spouses. At this “Kitchen Table” gathering, considered the organization’s founding moment, the group began to draw up definitive plans for UPAPH.
The founders were dedicated to making UPAPH an organization that would:
- Create a network of support
- Keep patients and their families informed on current treatments, medications, and research
- Encourage the formation of patient support groups
- Maintain and build contacts with physicians caring for PH patients
- Encourage and support research on PH
- Educate patients and families about the disease
The organization officially achieved a 501 (c)(3) not-for-profit status on February 11, 1992. It continued to be run entirely by volunteers, often working from their respective kitchen tables, for the following seven years.
As the association grew, they continued to seek out advice from NORD on organizational and management issues. They developed a PH support line that was manned entirely by volunteers. With the expansion of patient outreach came a need for increased medical guidance. The organization developed a list of doctors who treat pulmonary hypertension in 1992 and prepared a packet of critical information to send to newly diagnosed patients.
A clinical trial of the first real PAH drug, epoprostenol, took place in 1993. Medical centers in the United States and Canada were involved in this milestone for the PH community.
In 1994, UPAPH held its first International PH Conference in Stone Mountain, Georgia. The conference featured the first Research Room, led by Dr. Greg Elliott, where patients gave blood samples which later contributed to the discovery of the PH gene. With the collaboration and research of the international community, UPAPH anticipated a rapid expansion.
1996 was a tumultuous year in the UPAPH community. A link was discovered between certain diet pills on the market and pulmonary hypertension. UPAPH was determined to keep fighting in this time of need. UPAPH hosted its second International PH Conference, seeking a new model of healthcare education for the 21st century.
In 1997, UPAPH reorganized and officially changed its name to the Pulmonary Hypertension Association (PHA). PHA launched its first website to disseminate valuable information across the globe. Just one year later in 1998, PHA published Pulmonary Hypertension: A Patient’s Survival Guide. This was an easy-to-read guide to help patients deal with the daily issues associated with pulmonary hypertension, written by patient and author Gail Boyer Hayes with the help from other patients, caregivers and medical professionals.