I was impressed.
Bonnie had a clear vision for PHA’s future. At the time, there were about 3,000 diagnosed patients in the U.S. – about a tenth of today’s number. She foresaw the need for the then small PHA to begin to develop greater patient and medical activities.
Two months later, I was invited to meet the Board. At the time, there was only one treatment for the disease. It was complex and very few doctors had developed the expertise to work with it. In that environment, wherever possible, patients sat on the Board with their caregivers.
During that first meeting, as decisions were being made, I heard words like, “I don’t know if this decision will help me, but I think it will help the next generation of patients. We should do it.”
It was clear I was in the presence of extraordinary people.
The strength and vision of that leadership has been changing the picture for PH patients ever since.
Of course, that leadership was not limited to those at that meeting.
It has been continuous before and since.
It includes the families who have helped PHA raise and commit more than $14,000,000 to research (so far). It includes the more than 300 support group leaders and co-leaders who are helping patients and families in their own communities, while building a strong national structure. It includes the nurses, pharmacists, respiratory therapists and social workers who organized and lead the PH Professional Network, enhancing professionalism in the field and developing educational materials for patients and families. It includes the doctors and researchers who have built PHA’s medical journal, educational programs and, now, medical center accreditation program to improve the quality of care for PH patients.
|PHA's Board of Trustees meets during |
PHA's 2014 International PH Conference and Scientific Sessions.
We have come a long way in the 16 years since that meeting. Survivability has extended with 11 more treatments, and quality of life continues to improve. Yet, we still have a long way to go.
Like those early leaders, we walk that path together… with each of us doing what we can and what we must to change the future of this disease.
Here are five of the many ways you can get involved: