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Ed Rathonyi, Caregiver

Adding My Voice as a Parent Caregiver to PHA Canada’s Board of Directors



I applied to join the PHA Canada Board of Directors in 2018 because I wanted to give back to the PH community and contribute towards improving the lives of those living with PH. I was unsure how my engineering skill set would contribute to the board. Still, I had the connection to PH being the parent/caregiver of a PH patient. Having a connection to PH is the only common factor required of all PHA Canada directors.


I have been lucky to have had an amazing medical team supporting my family with our PH journey. There were some stages, particularly early on, where I needed to trust them. It was a lot and all new to me. I was forced to become PH aware. I felt trust was my only option, "trust but verify." Verification for me came from the PH community. The insight, support and hope I garnered from lived experiences promptly shared with me by the PH community after my daughter was diagnosed with PH was phenomenal. I will be forever grateful.


I am more confident in plans or decisions when they are backed by input from those with related life experience. PHA Canada comprises a diverse and motivated community united through a common connection to PH. A board of directors that reflects the diversity of the community it serves brings a deeper understanding of that community's needs, leads to more effective and impactful programming, and provides it with greater credibility. Ongoing efforts to maintain diversity on the board have contributed to PHA Canada's success.


As a member of the PH community and even more so as a member of the PHA Canada board, I am continuously inspired by witnessing patients, caregivers, parents, friends, doctors, nurses, researchers and other professionals all motivated and working together with the common goal of improving the lives of people living with PH. It gives me hope.


PHA Canada is currently seeking nominations to the Board of Directors. Learn more about the Board of Directors nomination process or other volunteer opportunties here. 

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