Support Group Leader Inspired to Advocate

My pulmonary hypertension journey began in the summer of 2019. After a bumpy start with doctors, I found my PH team at Penn Presbyterian Hospital in Philadelphia. My life changed after my doctor told me I wasn’t going to die and I found the Pulmonary Hypertension Association and its support groups.

As a PH patient, you learn something new every day — sometimes from your own body and sometimes from your medical team. Mostly, it’s from my fellow PHighters. We are small, but we are strong.

Last summer, my South Jersey Support Group leader Bonnie Patricelli asked me to co-lead our support group. I accepted without hesitation. I have learned, shared and received support and have been saddened and amused by my fellow support group members. Now, in addition to leading the South Jersey Support Group with Bonnie, I’m also a member of PHA’s Patient and Caregiver Education Committee.

Inspired by the knowledge from my support group, I attended PHA 2022 International PH Conference and Scientific Sessions in Atlanta. It was my first PHA conference. I decided to go to get more involved in PHighting for all of us. At the conference, I spent some time with Katie Kroner and Jaeger Spratt from PHA’s advocacy team. I now had no excuse not to get involved.

When PHA sent out an email about Advocacy August, I completed the form and sent it off to PHA. Jaeger responded and started me on my first — and I assure you — not my last advocacy meeting. I practiced with Jaeger before we scheduled meetings with legislative staffers to make sure I was comfortable. PHA sent me a packet that summarized PH legislative priorities. Jaeger’s coaching and the legislative materials gave me the confidence to speak about these subjects.

In my meetings, I talked with staff members from the offices of Sens. Robert Menendez and Corey Booker and Rep. Andy Kim. It was an honor to advocate and inform legislators about PH, the PH community and the struggles we live with every day.

The day after our call with Hilary Caron from Kim’s office, we received an email to let us know the congressman agreed to sign on as a co-sponsor of the HELP Copays Act. It actually feels like I made a difference.